Question about Endometriosis

[Mimi-in-Chicagoland]

I had a laparascopy for Endo a few years ago. I have been on birth control since and my doctor had me skipping periods to keep from growing any more. Then last September I had two strokes. They were caused by a blood clotting disorder--factor V leiden that was aggravated by my birth control. So, I am no longer able to take any sort of birth control. I am expecting my next period sometime this week. My cramps are awful. My whole abdomen aches! Is this endo pain...? I'm having a hard time figuring out what it is since before I hadn't gotten the IC pain under control. I'm going to have to go see my doctor and get some meds to control the pain. Tylenol and aspirin thins my blood. I'm still on coumadin.

[Katrina]

Sorry you are in so much pain and going through so much......(((((((((((((((((((big hugs))))))))).

birth control pills made my Endo worse in my mind.....can you try Lupron? It works a lot differently than birth control pills ....I doubt it would cause a blood clot.

For me one way to tell the what is causing my pain (weather IC or Endo) is to push on it (I know not necessarily fun)...IC pushing on it hurts mega...with endo...only slight,

Big hugs...let me know if I can help anymore.
Take care,

[Mimi-in-Chicagoland]

I'm going to check on the Lupron. I don't know if its an option for me because I don't know what it will do to my blood. I started my period today, but the cramps are AWFUL. I'm just lying on the sofa with my trusty heating pad.

[holles]

try your best to avoid lupron. i seriously think that's what caused my IC. i didn't start having trouble until going on lupron. it's one of the reasons my doc made me quit the treatment early.

the only thing that worked for me regarding endometriosis is excision surgery. instead of just lasering over the surface of the endo, my doc cut the tissue out and the tissue surrounding it. surgery was in june, and i've felt pretty good ever since.

lupron was a nightmare for me. i quit eating, lost a lot of weight, lost my ability to taste food (it's just now coming back), cholesterol went really high, severe depression, suicidal thoughts, and days without being able to urinate. do your research. find other options if you can.

this is just my opinion. but it was really bad for me. i do have bladder flares around my cycles. but i am able to cope with urelle.

[Mimi-in-Chicagoland]

I'm not allowed any hormones at all and I've had IC for 4 years now and have never been on Lupron. I think lupron would be about the only thing between me and a hysterectomy.

[Katrina]

Lupron is not a hormone.....It works on the brain to put you into a metapousal state.....sorry you had such problems with it holles....but it made my IC better.

Do what is best for you...but Lupron isn't a hormone.

Best Wishes,

[Mimi-in-Chicagoland]

I did a search on Lupron. Its contraindicated for people with thrombophilic conditions or blood conditions...that would be me. Even though its not a hormone, my blood will still clot if I take it. I could develop DVT.

I'm going to get some pain meds. Then I'm going to see the perinatologist that was recommended to me. If he says that getting pregnant after a stroke, etc. would not be wise, I'm going to look into a hysterectomy. If the perinatologist says that I could have children, I will seek other endo options...maybe another laprascopy. (altho surgery for me is more risky.)

[arcticfox]

Sorry Mimi that you are having a hard time with your endo. I have endo as well. Currently I am on Lupron shots once a month.
They are helping me, still have some spotting and some cramps, so I am taking Premarin, inserting it vaginally every other day for about 2 weeks. Seems to be helping. As for the endo affecting my IC, I have not made that correlation. I do think that the two are related in some way though since I have severe endo and it is on my bladder. I have had a problem with blood clots as well when I was on the pill, it is not very much fun.

Talk with your doctor, there must be an option out there for you.

Arcticfox :hi:

[Mimi-in-Chicagoland]

I have an appointment with the perinatologist. His practice also does high risk GYN surgery. :D I was doing fine with the birth control options before. However, once you have a thrombolic event--like blood clots or stroke--my hemotologist won't let me look at hormones. I did take some tylenol today. I even have to be careful taking tylenol because it thins my blood too much. I am going to see my PCP on Thurs and get some pain medicine to hold me over until I see the perinatologist. I also found out that I need that laparascopy where they dig out the endometrial tissue not laser it. I didn't know that last time. Although I did have endometriosis on my bladder...and I would NOT want them digging on that. :eek:
Because of the two strokes and clotting factor, not to mention IC and interstim implant I am in the extreme high risk pregnancy category. My regular OB-GYN said he's not qualified to treat me during pregnancy. This perinatologist will tell me all the risks of getting pregnant. Miscarriage is higher than normal. There is also risk of stroke to the baby and pre-eclampsia. I also have to be on heparin shots. (I get huge knots on my tummy from those shots) I think it was YankeeCandle that was telling me that I'm looking at about a 12 week stay in the high risk OB ward. This is what I already know. My OB-GYN recommended that I see this perinatologist to see what he thought. If he says my risk is too high, I'm going to seriously consider a hysterectomy. My birth mother died at 42 of ovarian cancer. I have recurring ovarian cysts. I guess I can deal with hot flashes etc. herbally. At least I can get rid of of the endo! I can't say that its bothering my IC right now....the interstim implant is really keeping it under control!:D

I'm not saying I don't want to get pregnant because I don't want to take shots or be on bed rest...its the fear of pre-eclampsia and the fact that I already have low blood pressure and strange heart pulses, etc. My husband watched me have two strokes. He was in the family waiting room by himself and thought I was going to die. I'm not putting him through that again. I'm adopted and I'm all for that. My parents obviously are for that. My in-laws support us as well...both of their daughters-in-law are adopted.:D

[WendyM]

I had surgery for endo just over 3 years ago ......I try taking Flax oil. I take large doses 2 gels with every meal - no endo pains at all - Doc says it does something to smooth the muscles .....so no cramps. It works for me anyway....