Endometriosis sufferers

[Defenderofthefaith]

Those who suffer from this disorder, like I have my whole life. I am trying to find something that works without side effects--I know, good luck to that!

[mvir9]

When I was 19, my doctor put me on a series of shots to assist with the endometriosis (I have scar tissue ALL over my organs). Of course, I was too young and naive to ask any questions. After the first shot, I developed horrifying migraines (which include such symptoms as facial paralysis, muscle spasms, etc.). One doctor I saw thought I might be having a stroke. As it turns out, my migraines were caused by the first shot. Needless to say, I didn't finish the shots -- but I'm stuck with these migraines FOREVER. Nice, huh?

Of course, the best thing for my endometriosis was pregnancy -- albeit a temporary fix, it worked wonders for 9 months during both of my pregnancies.

Now, I simply deal with it. There isn't much more that I can do at this stage of the game.

[Defenderofthefaith]

I've had two laparascopies, and they wanted to do a hysterectomy, but I'm trying to hold off on that so I don't have to take replacement hormone therapy. The last gyn wanted me to take ocs but can't due to my hbp so she put me on the mini pill, but I talked with my PCP and I'm going to stop that. It has too many side effects and is not really helping the endo. I also use the Mirena. The gyn said to use ibuprofen too.

[ironbutterfly]

Is the mini pill the progesteron only one? If so, it saved me it really did. I have had endo since a teen, been scraped once. I say I don't want kids but I am always wanting options so I said no to ablation or anything they would leave me sterile.

The progesterone only pill was my godsend. I still get bad periods but they pale in comparison than the red river that I dealt with sometimes twice a month. I would get two periods a month, bleed a month straight etc. After a year on the progesterone only my periods were lighter, regular, and the clots I used to get disappeared.

The only thing with that particular pill is as a BC method it must be taken at the same time every day or you run the risk of getting knocked up. It is very sensitive.

[Aurio]

Hi guys. I'm 33 years old and I've just been diagnosed with endometriosis...I'd been trying to have kids with no luck...from the post I read that mvir9 had a baby...so I guess it can be possible. I'm still undergoing tests to see how extensive my endometriosis is. Do any of you suffer from spottings outside your regular period?

[Defenderofthefaith]

Is the mini pill the progesteron only one? If so, it saved me it really did. I have had endo since a teen, been scraped once. I say I don't want kids but I am always wanting options so I said no to ablation or anything they would leave me sterile.

The progesterone only pill was my godsend. I still get bad periods but they pale in comparison than the red river that I dealt with sometimes twice a month. I would get two periods a month, bleed a month straight etc. After a year on the progesterone only my periods were lighter, regular, and the clots I used to get disappeared.

The only thing with that particular pill is as a BC method it must be taken at the same time every day or you run the risk of getting knocked up. It is very sensitive.

I was using this in conjunction with the Mirena, but I hate it. My breasts are tender and I cry all the time. My PCP said I might want to discontinue it. I haven't had periods for a couple of years due to the Mirena and I don't miss them. They were so heavy and painful every month. I've had D&Cs and they didn't help. Didn't want the ablation since you can still conceive and that would be bad for me and the baby. The Mirena has a very small amount of progestin and isn't bad.

[Defenderofthefaith]

Hi guys. I'm 33 years old and I've just been diagnosed with endometriosis...I'd been trying to have kids with no luck...from the post I read that mvir9 had a baby...so I guess it can be possible. I'm still undergoing tests to see how extensive my endometriosis is. Do any of you suffer from spottings outside your regular period?

Endo never affected my ability to conceive although my endo is between stage 3 and stage 4. I didn't spot in addition to my periods, but my bleeding was heavy and long.

[mvir9]

Hi guys. I'm 33 years old and I've just been diagnosed with endometriosis...I'd been trying to have kids with no luck...from the post I read that mvir9 had a baby...so I guess it can be possible. I'm still undergoing tests to see how extensive my endometriosis is. Do any of you suffer from spottings outside your regular period?

Hey there! I was intitially told that I COULDN'T have kids due to all of the scar tissue, but I ended up pregnant a month later. What they didn't tell me is that the scope procedure makes you more fertile! :) I was thrilled, even though I was only 19 -- it was horrible thinking that I would never have kids. However, they said that it was a "fluke" and would never happen again. So, hubby and I didn't worry about protection. When my daughter was one, I found out that I was pregnant again (no scope this time). And, of course, the doctor said that it was a "fluke" and would never happen again. Well, after two GREAT daughters, I decided I had had plenty of kids -- and I was never going to trust the doctor again about pregnancies! SO, we've been using birth control ever since.

So, I can attest to the fact that endometriosis doens't necessarily create infertility. :)

[bearbaby_26]

Hi guys. I'm 33 years old and I've just been diagnosed with endometriosis...I'd been trying to have kids with no luck...from the post I read that mvir9 had a baby...so I guess it can be possible. I'm still undergoing tests to see how extensive my endometriosis is. Do any of you suffer from spottings outside your regular period?

I have endo and PCOS and have a two year old son. It is possible but I needed lots of help from a fertility specialist to get pregnant. I was 33 when I had my son, 32 when I got pregnant. I had two miscarriages and an ectopic pregnancy before having my son. I do have spotting. I also have periods that last months (until the docs give me medicine to stop the bleeding or I have another D&C). If you want to get pregnant, I would suggest asking your gyno to refer you to a specialist. I hate to sound negative but I wasted too much time screwing around with regular ob/gyns who really didn't specialize in my problems.

As far as surgeries go, I've had four D&Cs (counting after miscarriages) and six laps. I've also had "open" surgery where they had to cut like a hysterectomy to remove a dermoid cyst (teratoma) from inside my ovary. Trust me, if you don't know what that is, don't look it up. Sorry if this is TMI. :eek2:

[psipsina]

I have endo, diagnosed at 16 with a laproscopy. I've had a second lap since then. What works best for me is using the ring continuously so I don't get any periods. I've been asymptomatic since I started doing that. The ring uses the same hormones as BCPs but in much smaller doses because its so close to its destination so I get alot fewer side effects from it. Also helpful for me was finding out about my food sensitivities which my naturopath says are closely linked to endo and the migraines that I always got when menstruating.

[psipsina]

I have endo and PCOS and have a two year old son. It is possible but I needed lots of help from a fertility specialist to get pregnant. I was 33 when I had my son, 32 when I got pregnant. I had two miscarriages and an ectopic pregnancy before having my son. I do have spotting. I also have periods that last months (until the docs give me medicine to stop the bleeding or I have another D&C). If you want to get pregnant, I would suggest asking your gyno to refer you to a specialist. I hate to sound negative but I wasted too much time screwing around with regular ob/gyns who really didn't specialize in my problems.

As far as surgeries go, I've had four D&Cs (counting after miscarriages) and six laps. I've also had "open" surgery where they had to cut like a hysterectomy to remove a dermoid cyst (teratoma) from inside my ovary. Trust me, if you don't know what that is, don't look it up. Sorry if this is TMI. :eek2:

Lol at the last part . . . I know what it is so I feel you on the whole ignorance is bliss thing lol.

[Defenderofthefaith]

I've had five pregnancies, and two miscarriages(three full term babies.) I am very fertile without contraception. Statistically speaking, endo causes infertility in about 40% of cases. It depends where the scar tissue is located. I have a cousin who has endo as well, and she needed treatments to get pregnant. I want another lap, but I need to find another gyn, because this one doesn't seem to be so knowledgeable about the subject.

[Aurio]

I wanted to thank you ladies for all your responses. Like I said before, I was diagnosed this Monday with endometriosis and my doctor was not very positive when I raised the question of children. I asked him about surgery to get rid of the endiometriosis and he said surgery has its own risk and many times it doesn't work. When I told him I was spotting outside of my period he said it had nothing to do with endiometriosis and we needed to find out why I am spotting. He wants some extra tests done.
I'm going to wait until all my tests are ready and then request to see a fertility specialist. He didn't tell me how to stop my spotting and that is driving me crazy :(
I'm glad for this thread and glad to know I'm not dying (which is what I tought when he said the spotting had nothing to do with endometriosis).
Would you mind telling me what these terms mean: OCS, HBP, and D&C? I guess scraped, ablation and scope are ways of eliminating the endometriosis...are they done laparoscopy or through open surgery.
Sorry for my ignorance...I'm still recovering from the shock of the diagnosis :)

[bearbaby_26]

I wanted to thank you ladies for all your responses. Like I said before, I was diagnosed this Monday with endometriosis and my doctor was not very positive when I raised the question of children. I asked him about surgery to get rid of the endiometriosis and he said surgery has its own risk and many times it doesn't work. When I told him I was spotting outside of my period he said it had nothing to do with endiometriosis and we needed to find out why I am spotting. He wants some extra tests done.
I'm going to wait until all my tests are ready and then request to see a fertility specialist. He didn't tell me how to stop my spotting and that is driving me crazy :(
I'm glad for this thread and glad to know I'm not dying (which is what I tought when he said the spotting had nothing to do with endometriosis).
Would you mind telling me what these terms mean: OCS, HBP, and D&C? I guess scraped, ablation and scope are ways of eliminating the endometriosis...are they done laparoscopy or through open surgery.Sorry for my ignorance...I'm still recovering from the shock of the diagnosis :)

PCOS is short for Polycystic Ovarian Syndrome. Its a completely different disease from endo. Its an endocrine disease that strikes about one in ten women.
http://en.wikipedia.org/wiki/Polycystic_ovary_syndrome

HBP, I believe, is high blood pressure.

A D&C is short for dilation and curettage. The D stands for dilation, which means enlarging. Curettage (the C) means scraping. Together, this procedure involves expanding or enlarging the entrance of a woman’s uterus so that a thin, sharp instrument can scrape or suction away the lining of the uterus and take tissue samples. Basically, the doctor would go up through your vagina (usually you are put under anesthesia) and scrape out the lining of your uterus. This is sometimes done after you have a miscarriage to make sure all the remains of the pregnancy are gone (so you don't get an infection from leftover tissue). It can also be used to try to stop abnormal bleeding. And, to be completely honest, I believe its also how abortions are performed. Its usually an outpatient procedure and you are only sore for a few days (but you will bleed afterwards for awhile).

I know that its scary to get this diagnosis. But, look at it this way; now that you know what is wrong, you can start to treat it. Feel free to PM me. :gvibes:

[Defenderofthefaith]

OCs are oral contraceptives and bearbaby correctly defined the other terms. A lot of women have endometriosis(and in rare cases, men have it as well.) A good website for info on this is:
http://endometriosis.org/

[Aurio]

Thank you for all the info!
:grouphug:

[bearbaby_26]

OCs are oral contraceptives and bearbaby correctly defined the other terms. A lot of women have endometriosis(and in rare cases, men have it as well.) A good website for info on this is:
http://endometriosis.org/

Thanks for catching that one! I left it out by accident. Good link for info about endometriosis too! :)

[astromynx]

I have endometriosis. I got it after having a c-section in 2001. Here's what has happened to me with endo:

2002- diagnosed; laparoscopic surgery to remove masses of endo and adhesions

2003- put on Premarin for six months to suppress the endo, but it didn't work

2004- c-section incision reopened to remove endo and adhesions

2005- c-section incision reopened to remove endo and adhesions

2006- c-section incision reopened to remove endo and adhesions

2006- c-section incision reopened to remove endo and adhesions

2007- c-section incision reopened to remove endo; tried lidocaine patches on lower abdomen to relieve pain, but they didn't help; put on birth control pills to lessen bleeding and length of periods

2007- (this past december) c-section incision plus areas extending on both sides of incision to hip bones reopened to remove endo. This was such an extensive surgery that I had to have a plastic surgeon put me back together.

2008- I have had two rounds of trigger point injections (six to eight injections at once) that did nothing to relieve the pain. I have also tried Neuropamax gel and Limbrel with no effect. Taken off birth control pills because of flare-ups with pain while on them.

I have seen nine different doctors during this time for endometriosis. I have scar tissue on my organs. It hurts to empty my bladder because it has so much scar tissue on it.

I am still in pain.

[bearbaby_26]

I have endometriosis. I got it after having a c-section in 2001. Here's what has happened to me with endo:

2002- diagnosed; laparoscopic surgery to remove masses of endo and adhesions

2003- put on Premarin for six months to suppress the endo, but it didn't work

2004- c-section incision reopened to remove endo and adhesions

2005- c-section incision reopened to remove endo and adhesions

2006- c-section incision reopened to remove endo and adhesions

2006- c-section incision reopened to remove endo and adhesions

2007- c-section incision reopened to remove endo; tried lidocaine patches on lower abdomen to relieve pain, but they didn't help; put on birth control pills to lessen bleeding and length of periods

2007- (this past december) c-section incision plus areas extending on both sides of incision to hip bones reopened to remove endo. This was such an extensive surgery that I had to have a plastic surgeon put me back together.

2008- I have had two rounds of trigger point injections (six to eight injections at once) that did nothing to relieve the pain. I have also tried Neuropamax gel and Limbrel with no effect. Taken off birth control pills because of flare-ups with pain while on them.

I have seen nine different doctors during this time for endometriosis. I have scar tissue on my organs. It hurts to empty my bladder because it has so much scar tissue on it.

I am still in pain.

Wow. I am so sorry. I wish someone would figure out some way to help you! This disease sucks. :grouphug:

[ironbutterfly]

I have endometriosis. I got it after having a c-section in 2001. Here's what has happened to me with endo:

2002- diagnosed; laparoscopic surgery to remove masses of endo and adhesions

2003- put on Premarin for six months to suppress the endo, but it didn't work

2004- c-section incision reopened to remove endo and adhesions

2005- c-section incision reopened to remove endo and adhesions

2006- c-section incision reopened to remove endo and adhesions

2006- c-section incision reopened to remove endo and adhesions

2007- c-section incision reopened to remove endo; tried lidocaine patches on lower abdomen to relieve pain, but they didn't help; put on birth control pills to lessen bleeding and length of periods

2007- (this past december) c-section incision plus areas extending on both sides of incision to hip bones reopened to remove endo. This was such an extensive surgery that I had to have a plastic surgeon put me back together.

2008- I have had two rounds of trigger point injections (six to eight injections at once) that did nothing to relieve the pain. I have also tried Neuropamax gel and Limbrel with no effect. Taken off birth control pills because of flare-ups with pain while on them.

I have seen nine different doctors during this time for endometriosis. I have scar tissue on my organs. It hurts to empty my bladder because it has so much scar tissue on it.

I am still in pain.

Oh honey:hugs:

[Aurio]

I'm so sorry Astromynx :cry2:

[astromynx]

Thanks. It's been rough for me dealing with endometriosis. I have learned how much pain I can take....not that I really needed to know that. lol

I was supposed to have an appointment today with my doctor to discuss more treatment options. Someone in his office called me about a week ago to tell me that he is out indefinately on medical leave, and my appointment would have to be canceled. There is another doctor in his office, and I have seen him, as well. He assisted with my last surgery, and I saw him a few weeks ago. The second doctor is attempting to take over as many patients as he can, but I don't have a new appt yet.

I currently am not in as much pain as I have been at other times, but it is still there.

[Defenderofthefaith]

:hugs: Astromynx

[Aurio]

I'm going to have a hysterography in 1 1/2 hrs and I'm a bit scared. A friend told me that it dowsn't hurt much but just reading the word catheter sends me into panic!!

[ironbutterfly]

Bleeding again:worry2: I just had an appt with my gyno last week, she is just amazed that I even get a period anymore as most women on the progesterone pill cease with periods eventually. Now I am having my period every 3 weeks, and today have some breakthough bleeding:bhead:

After discussing I mentioned how the last few times I've had my script refilled they bounce between two different pill packs, althought they were both generic versions supposed to be the same. She said that she wondered with my case if minute variances in the two pills might be effecting me more than they should:chill:

So now I have to get a new vaginal ultrasound. After todays bleeding started I called the pharmacy and asked if there was anyway to make sure I get the same exact pill pack every time. The woman was very very nice and said she would make sure to not run out and note my account with blue pack.

[Julieb]

I've had two laparascopies, and they wanted to do a hysterectomy, but I'm trying to hold off on that so I don't have to take replacement hormone therapy. The last gyn wanted me to take ocs but can't due to my hbp so she put me on the mini pill, but I talked with my PCP and I'm going to stop that. It has too many side effects and is not really helping the endo. I also use the Mirena. The gyn said to use ibuprofen too.


I had a TAH (total abdominal hysterectomy) in June 2006. They did not remove my ovaries and I no longer have the pain associated with endometriosis. If at least 1 overy is left intact, you should not need hormone therapy. When I asked about having a uterine ablation my doctor said that he felt it would be just a temporary fix and that within a year I would still need a hysterectomy, so why waste the time and money on ablation. I feel so much better now.

[ironbutterfly]

That's good to know julie. Many moons ago, before the progesterone pill, I was headed down that road. Horrible 21 day periods, gigantic clots, I was always recouperating from the period or getting ready for another round. This pill completly changed my quality of life until this recent batch of problems........ you know it was bad when I can be really happy to only have a 7 - 9 day period instead of 14-21 I did for a few years.

I have always been afraid that if I did something irrevocable to my womb, one day I would up and want a baby and not be able to have one. even though I don't want kids, I still want the option if that makes sense:wavy:

[Julieb]

That's good to know julie. Many moons ago, before the progesterone pill, I was headed down that road. Horrible 21 day periods, gigantic clots, I was always recouperating from the period or getting ready for another round. This pill completly changed my quality of life until this recent batch of problems........ you know it was bad when I can be really happy to only have a 7 - 9 day period instead of 14-21 I did for a few years.

I have always been afraid that if I did something irrevocable to my womb, one day I would up and want a baby and not be able to have one. even though I don't want kids, I still want the option if that makes sense:wavy:


It totally makes sense to me that you don't want that option taken away from you. I can sympathize with you about the bleeding, clots, etc. I was at the point where I was lucky to get 1-1/2 weeks between periods. Some days, I would just sit on the toilet and bleed a steady flow. Sorry to be so gross. When I would sit in a chair, it felt like I was sitting on an ice pick (in addition to the constant abdominal pain and pain down my thighs). My childbearing days are behind me and I hope women who do not plan on becoming pregnant consider hysterectomy a viable option. I was 37 when I had it done and wish I had done it sooner.

[ironbutterfly]

My best friend had her hysterectomy for the same reason. She needed transfusions. I cleaned her litterbox and did did housework for her ( she lived alone )

[Defenderofthefaith]

IB, have you thought of the Mirena? I had horrid periods since I was 11 before using it. Now I haven't bled in years. I love it!

[ironbutterfly]

IB, have you thought of the Mirena? I had horrid periods since I was 11 before using it. Now I haven't bled in years. I love it!


My doctor said I am not a good candidate for it, both the doctor I went when we lived in the country, and now here is the city have basically said with other complications I've had it's not a good fit for me.

[Defenderofthefaith]

They tried to discourage me with my pain, but I insisted and was glad I did. Doctors never know your body as well as you do.
Also, if they don't give you the same exact POP every time, it is the reason for the bleeding. I hated the POP myself--I have tried them a couple of times and they had more side effects than the Mirena.

[ironbutterfly]

Well hopefully after the call to the pharmacy I made this problem will be over soon. I plan on sending them a thank you card, they are very nice down there.

My doctor understands my pain. For my worst days of the period I take one or two darvocets. My doctor said all the pamprin/advil combos were thinning the blood making it worse, and tearing up my tummy:sweat:

[Defenderofthefaith]

Well hopefully after the call to the pharmacy I made this problem will be over soon. I plan on sending them a thank you card, they are very nice down there.

My doctor understands my pain. For my worst days of the period I take one or two darvocets. My doctor said all the pamprin/advil combos were thinning the blood making it worse, and tearing up my tummy:sweat:
:hugs:

[Lisa4Christ]

I had a hysterectomy/oophorectomy in 2001. I took HRT for a couple of months, but it made me an emotional wreck. I do pretty well without HRT.

[tweety]

I chose not to have a hysterectomy and researched other options. Just wondered if anyone has heard of the Novasure procedure? The endometrial lining is removed using a microwave or radio frequency. I believe it is done more commonly in Europe and is a UK company. I had this done in November and the results have been phenomenal. People told me I looked more energetic the very next day.

Just a note, this procedure is only for women who do not plan on having children.

[ironbutterfly]

I chose not to have a hysterectomy and researched other options. Just wondered if anyone has heard of the Novasure procedure? The endometrial lining is removed using a microwave or radio frequency. I believe it is done more commonly in Europe and is a UK company. I had this done in November and the results have been phenomenal. People told me I looked more energetic the very next day.

Just a note, this procedure is only for women who do not plan on having children.


That's why I have chosed not to do the Novasure or ablation as you can't have kids.

Can any of you wise women explain why a woman who has said she doesn't want kids ever is so against having the option taken away? I can't figure myself out sometimes:laugh2: I just know I am fickle and am afraid to take a step I can't take back.

[Defenderofthefaith]

I chose not to have a hysterectomy and researched other options. Just wondered if anyone has heard of the Novasure procedure? The endometrial lining is removed using a microwave or radio frequency. I believe it is done more commonly in Europe and is a UK company. I had this done in November and the results have been phenomenal. People told me I looked more energetic the very next day.

Just a note, this procedure is only for women who do not plan on having children.
I decided not to get this procedure since you can still get pregnant even though the pregnancy most likely will not be able to sustain the pregnancy. I need an option that is both contraceptive and therapeutic.

[Julieb]

I decided not to get this procedure since you can still get pregnant even though the pregnancy most likely will not be able to sustain the pregnancy. I need an option that is both contraceptive and therapeutic.

Just curious, why is hysterectomy not an option for you then?

[love2winstuff]

That's why I have chosed not to do the Novasure or ablation as you can't have kids.

Can any of you wise women explain why a woman who has said she doesn't want kids ever is so against having the option taken away? I can't figure myself out sometimes:laugh2: I just know I am fickle and am afraid to take a step I can't take back.


Because it is soooooo FINAL. No turning back after that decision is made. I don't blame you, I'd feel the same. I have two boys, and sware up and down I don't want anymore, but I'm not ready to take that final step yet. I totally understand! :hugs:

[Defenderofthefaith]

Just curious, why is hysterectomy not an option for you then?
I'm only 40 and worry about the side effects from that if the ovaries are also removed and I don't want HRT. Also, I have three kids twelve and under, and don't have the time for a recovery period.

[Julieb]

I'm only 40 and worry about the side effects from that if the ovaries are also removed and I don't want HRT. Also, I have three kids twelve and under, and don't have the time for a recovery period.

I understand about the recovery period, I'm 38 with 2 kids- 9 and 15. I also work 32 hrs. per week. I had a hysterectomy but kept both ovaries and it has really helped. I had an abdominal hysterectomy, but if you can have a vaginal hysterectomy the recovery is a lot easier. I had my surgery when I was 37.

[astromynx]

That's why I have chosed not to do the Novasure or ablation as you can't have kids.

Can any of you wise women explain why a woman who has said she doesn't want kids ever is so against having the option taken away? I can't figure myself out sometimes:laugh2: I just know I am fickle and am afraid to take a step I can't take back.

:hugs:
When I was younger, I didn't want any kids. I was actually on the pill both times I got pregnant. When I had my second, I made the firm decision to have my tubes tied. I was in a bad situation at the time. I cried for days afterwards, though. It felt so final! I knew it was the best decision, but I felt like a part of me was gone forever.

The only reason now that I haven't had a hysterectomy is because I worry about HRT. I have been told by several doctors that a hysterectomy may not alleviate the pain since it is hormones that feed the endo and that HRT could possibly feed it, as well. That freakin' terrifies me that I might do that and the pain could still be there.

My remaining endometrosis that was missed during my last endo-removing (seventh?) surgery has grown from a mass at the left side of my pubic bone and now is growing down into my left thigh, curling around back just below my butt cheek. :shocked:

[Hottie21]

I Too Have Endo....i Have Went In For Laproscopy, Hysteroscopy & Dnc....then 2 Months Later Went In & Had My Left Ovary Removed---endo Killed It :(

Then The Dr. Wanted Me To Go On Lupron Depot Shots, To Help Keep The Endo Away To See If We Can Conceive Then, Well I Didn't Listen To The Dr, & Refused The Lurpon(because Of All The Side-effects). Well We Still Didn't Get Prggo, So We Went Back To See If We Could Start Fertility Shots----sure Did. Started Taking The Shots & The Endo Was Growing Along & Wam The Cyst On The Only Ovary, Right Ovary Busted!! Needless To Say When I Went In To The Er, My Preggo Test Came Back + & They Could See 3 Eggs/folicles. I Spent 3 Days In The Hospital( Right Before Christmas Of 2007). Needless To Say No Babies :(

Went Back To The Dr. In Feruary-2008(waited Cause I Was Scared Of What The Dr. Was Going To Tell Me) & The Cyst(endo) Is Now Bigger Than It Ever Has Been---it Grew That Big In 1 1/2 Months :( Now I Am On Lupron Depot Shots--3 Month Cycle---this Is A Cancer Paitent Drug To Help Shrink The Cyst(endo). The Lupron Is Giving Me Major Migraines As Well, So My Fertility Dr. Put Me On Birth Control, Because My Estrogen Levels Were Being Depleted From The Lupron, Giving Me The Migraines.

So I Will Be Playing The Waiting Game Come June/o8!!

I Hope Everyone Is Doing Well & Able To Manage The Pain---it Really Sucks, But I Guess US Woman Could Have Other Mean Diseases That ARE Way More Harsh :(

Take Care All & I Will Update Soon!!

Rhonda

[ironbutterfly]

Big hugs to all of you. I am really sorry Rhonda:hugs:

[tawnjun]

I had a uterine ablation done about 8 years ago. It was the best thing I've ever done for myself. I used to have very heavy periods. They insert a balloon into the cervix and inflate it with hot liquid and it sears off the excess cervical lining. If you're wanting to have kids, you don't want to do this. I had horrible cramps, bleeding for two weeks each month and for me, this was a lifesaver.

I took the depo shot for a few years and I stopped about 3 years ago and I haven't had a period at all. I could be going through menopause though. lol. Don't have any symptoms of it though.

Also, I had very little pain with the procedure. Just minimal cramping.

I feel for all of you. I already had kids when I did this. I also suffered through horrible migraines for many years. Still get those, but not nearly as bad.

[Defenderofthefaith]

The crazy thing is, I want one more baby too. Well, sometimes I do, and a lot of times I don't. I, like IB, just don't want to completely take away the option I guess which is another reason why I haven't yet had a hyst/o.

[ironbutterfly]

Hubby brought me home soft batch chocolate chip cookies and 2 kinds of pads :loveu: I'm glad I gritted teeth and made him a nice dinner. I actually called in today because I just could face this heavy bleeding at work all day.

Told my boss it was girl stuff and that I would come in tomorrow instead, he's very nice about things like that.

[Defenderofthefaith]

New research states green tea may help control endometriosis see here: (http://www.endometriosis.org/world_congress_endometriosis_2008.html

[Maddgiggler]

I had a tubal a year and a half ago after my last pregnancy. Now my body hates me. The clots are enormous. I have pain especially near my ovaries 4 our of 7 days on a good week. Sometimes when I wake up I get a clot out of nowhere. Then nothing. At first my cycle went from 28 days to 45. Now I seem to spot all the time and my periods are longer than I ever remember. For the most part though, I'm not in an unusual amount pain when I'm actually having a period. The pain happens during the rest of my cycle.

I talked to the Dr about it in November. He mentioned endometriosis but said that laparoscopy needed to be done for an actual diagnosis. He ordered an ultrasound. It showed nothing unusual. The Doctor then suggested either trying the bc pill to ease the symptoms and/or then considering laparoscopy . I don't like to take medicine or have anything done to my body. I thought I'd tough it out for awhile longer. I told him that I'd wait on doing anything else unless things started getting worse or caused me to miss work.

Well, it's much worse. I broke down and called and asked for an RX for the pill. Trivora was called in. I just started taking it this week.

Realistically, based on everyone's experience what kind of relief can I expect from the pill? I've been on the bc pill before but it was before my tubal and I wasn't having any issues. Does it take the edge off the pain and clots or am I just delaying the inevitable lapraroscopy (which I am honestly scared of because I'm a wimp with things like that)?

Thanks in advance for your responses.

[souldolphindream]

I will pray for all of you that are still suffering from endometriosis. I had always had very bad periods from the time that I was 12 years old. It got worse after I had my first child. I ended up having 5 laproscopys and tried all the pills and shots and nothing worked. The pain was getting to be so bad that I couldnt even work. I would bleed so bad. My doctor finally decided to just take it all out so that i wouldnt have the pain anymore i also had pre-cancer cells so it was for the best. I dont miss the pain anymore. I dont recommend this for everyone. I was 26 when I had the surgury but for me it was the best choice.

[mrowe2008]

Hey look, a group that I sadly belong to. :frown3: And it's even 'that time' right now. Glad to know I'm not the only one suffering.

[tweety]

Madgiggler,

I posted about this before, but since you've had a TL, you might want to consider a microwave abation. It is common in Europe, and is far less painful than laser ablation. I had the same symptoms as you. I was afraid to make plane reservations or be away from home. It did affect work, too.

The day after I had it, everyone said I was so much perkier. It is an amazing procedure...at least for me. Having something this severe taken care of is liberating.

t

[ironbutterfly]

Well I am sorry to say my periods are now officially coming twice a month:worry2: I was in denial the first couple of months, thinking it was stress or whatever......but there is no denying the red dots on the calenders:frown4:

I have been controlled for years on the progesterone only pill, the bleeding and clots were horrible with the regular pill. I have to make an appointment and see what she wants to do.

I don't understand why I can't just say F68K it, give me the ablation, but I so scared I'll wake up one day and want to have baby/ I don't want kids but I am so fickle what if all of a sudden I'm, 34 and want a little hippie baby:cry2:

I want a well behaved womb:bawl: I feel hopeless today. The whole ordeal is about to start all over again. All this bleeding and bloating makes me feel like a fat ugly pig.

[Defenderofthefaith]

Well I am sorry to say my periods are now officially coming twice a month:worry2: I was in denial the first couple of months, thinking it was stress or whatever......but there is no denying the red dots on the calenders:frown4:

I have been controlled for years on the progesterone only pill, the bleeding and clots were horrible with the regular pill. I have to make an appointment and see what she wants to do.

I don't understand why I can't just say F68K it, give me the ablation, but I so scared I'll wake up one day and want to have baby/ I don't want kids but I am so fickle what if all of a sudden I'm, 34 and want a little hippie baby:cry2:

I want a well behaved womb:bawl: I feel hopeless today. The whole ordeal is about to start all over again. All this bleeding and bloating makes me feel like a fat ugly pig.

:hugs: That's one of the good things about the Mirena--haven't had periods for around two years now and that's heaven!

[ironbutterfly]

Is Mirena the IUD? My doctor doesn't feel I am a good for it because of all my issues. She thinks I would wind up having it embed and cause more problems.

Thank you for understand though. Women who get normal periods have no idea what it's like.

[astromynx]

So sorry, IB. I'm kind of bracing myself for another round, too. I was getting them every 6 weeks for a while (which was nice), but the last three have been 2 weeks apart. I'm right at that 2 week mark now...ugh.

I go back to the doctor next month. I have no idea what my options are any more. I cannot take the pill. I don't think I can handle any more surgeries. I'm up to nine now. :frown3:

I told my husband that I cannot wait for menopause. He said, "I can." :uhoh:

[ironbutterfly]

So sorry, IB. I'm kind of bracing myself for another round, too. I was getting them every 6 weeks for a while (which was nice), but the last three have been 2 weeks apart. I'm right at that 2 week mark now...ugh.

I go back to the doctor next month. I have no idea what my options are any more. I cannot take the pill. I don't think I can handle any more surgeries. I'm up to nine now. :frown3:

I told my husband that I cannot wait for menopause. He said, "I can." :uhoh:

Big hugs and soft fluffy pads girl:hugs:

Any other animal that bled for week at a time twice a month would die, we are some pretty strong women, even if we don't feel like it most days:frown4:

[Defenderofthefaith]

Is Mirena the IUD? My doctor doesn't feel I am a good for it because of all my issues. She thinks I would wind up having it embed and cause more problems.

Thank you for understand though. Women who get normal periods have no idea what it's like.

They didn't want to insert mine, but I insisted after having another mess after a D&C. The only thing is that now the strings are inside my cervix and they will have to use a hysterscope and probably dilate me to extract it in the next year or two since I have a very small cervical opening(didn't dilate past 2-3 cm for my babies.) I don't know what I am going to do then b/c I don't really want a hysterectomy but I never want to deal with the mess again. My periods were coming too frequently and were so heavy all the time they ruined my life!

[astromynx]

I feel like I have been punched in the gut this evening. :bawl:

DH and all the kids are out in the gameroom playing with the new Wii and shooting pool while I'm curled up on the couch with lots of pillows watching HGTV and trying to be as still as possible.

[dharley]

Hi ladies, new to this thread but not to OLS.
Sigh...
I'll be 40 this month. My Dr., who is one of the best in this state, just told me she is recommending a hysterectomy. I have had endometriosis for years, have had numerous surgeries and am in constant pain. I have one good ovary, which will remain to help with the hormones. I went a head and scheduled the surgery for the beginning of December. My mother retires on November 30 and will be able to stay with me during the day when I return from the hospital. My husband doesn't have enough vaca/sick time to take off, so this was a good solution. I am not looking forward to this but am looking forward to possibly being pain free. The other thing I am hoping for is no or fewer migraines, which are associated with my cycles every month. I am on two prevention meds and also have shots and pills I can take when one comes on. Sometimes they get so bad ,....I end up in the Emergency Department.

[birdpix]

They had my DW on the injectable birth control for several years and it really did help control her pain.


Hi guys. I'm 33 years old and I've just been diagnosed with endometriosis...I'd been trying to have kids with no luck...from the post I read that mvir9 had a baby...so I guess it can be possible. I'm still undergoing tests to see how extensive my endometriosis is. Do any of you suffer from spottings outside your regular period?

It is sometimes possible to have a baby with endo, but it can really complicate both getting and staying pregnant, so if that is an issue, IMHO, don't wait on that front - it will likely get harder with time.

My DW has had major issues from endo all her adult life, and we've lost all the babies she carried. Two tubals revealed major damage and pretty much put an end to our hopes forever of having a baby without massive medical expenses and major miracle...

[ironbutterfly]

Hi ladies, new to this thread but not to OLS.
Sigh...
I'll be 40 this month. My Dr., who is one of the best in this state, just told me she is recommending a hysterectomy. I have had endometriosis for years, have had numerous surgeries and am in constant pain. I have one good ovary, which will remain to help with the hormones. I went a head and scheduled the surgery for the beginning of December. My mother retires on November 30 and will be able to stay with me during the day when I return from the hospital. My husband doesn't have enough vaca/sick time to take off, so this was a good solution. I am not looking forward to this but am looking forward to possibly being pain free. The other thing I am hoping for is no or fewer migraines, which are associated with my cycles every month. I am on two prevention meds and also have shots and pills I can take when one comes on. Sometimes they get so bad ,....I end up in the Emergency Department.

My friend had her hysto and they were able to glue her incision shut, it takes longer in the surgery room, but her doctor took the extra time to do so there was less scarring. Look into it:hugs: Her doctor was a female and the other women we know who had male doctors used stitches.

Hugs to all us endo girls, peace and strength to you:hugs:

[KathBrat]

My DW has had major issues from endo all her adult life, and we've lost all the babies she carried. Two tubals revealed major damage and pretty much put an end to our hopes forever of having a baby without massive medical expenses and major miracle...


My heart goes out to you - I was diagnosed at 24 and experienced the tubals as well
Due to Endo - I had a Hyster three months ago @ age 45 - and with empty arms

I do feel fortunate that I have a hubby now that is very loving and supportive about the Endo

Big hugs to you and your wife
:hugs:

[Luckyrock]

I had an endometrioisis specialist(this is all he does) operate on me two weeks ago and I felt like a lawn mower went thru me. The new way of thinking is to go after the disease and not remove the female organs with a hysterectomy )or using Lupron(not permanent fixes) .....The gyno operated on me for 3 hours and looked under, over, and behind all my organs looking for the disease to remove. He even removed my appendix where it can hide......I found Dr Martin Robbins on the web and I am so glad he saw me. Dr Redwine is another specialist and he wrote a book about endometriosis you can read...... My doctor said he has seen women after 4 to 20 plus surgeries and helped them by getting the disease out. I had a regular gyno operate on me in April and he did nothing but recommend a hysterectomy and never took any samples out of me to test for the disease. I highly recommend seeing a gyno who only specializes in endometriosis and goes after the disease. Time will tell if this helps but so far so good. Good Luck to everyone trying to beat this disease.

[astromynx]

I had an endometrioisis specialist(this is all he does) operate on me two weeks ago and I felt like a lawn mower went thru me. The new way of thinking is to go after the disease and not remove the female organs with a hysterectomy )or using Lupron(not permanent fixes) .....The gyno operated on me for 3 hours and looked under, over, and behind all my organs looking for the disease to remove. He even removed my appendix where it can hide......I found Dr Martin Robbins on the web and I am so glad he saw me. Dr Redwine is another specialist and he wrote a book about endometriosis you can read...... My doctor said he has seen women after 4 to 20 plus surgeries and helped them by getting the disease out. I had a regular gyno operate on me in April and he did nothing but recommend a hysterectomy and never took any samples out of me to test for the disease. I highly recommend seeing a gyno who only specializes in endometriosis and goes after the disease. Time will tell if this helps but so far so good. Good Luck to everyone trying to beat this disease.

This is pretty much what I had done last October. I will not say I am endo-free, but I am so much better than I was. I had had 8 surgeries before my last one, but this one was life-altering. I can function again. It was a very long recovery, but things are much better for now.

I even had to have a section of my abdominal muscle wall removed. I had to have a plastic surgeon put me back together again, and I have a wall of "packing" in my abdomen. I do still have pain from some adhesions that formed, but I am thankful for what my doctor did for me.

Unfortunately, Dr. Perry passed away this past March. I am very fortunate to have found him when I did. I agree that women should seek a doctor that specializes in endometriosis. The regular ob/gyns have given me various diagnoses over the years including absolutely nothing wrong with me, a hernia, and even told me the hard mass of endo was just my pubic bone.

If my endo gets to the point again where I cannot function, I will definitely be seeing Dr. Perry's partner who assisted with my last surgery.

You take care during your recovery time. I hope this is the last one for you. Hugs!