HELP!! I'm 23 and my marriage is hurting as bad as I am!!!

I am 23 y/o with no children with less than four legs. I was dx with endo two years ago right before my wedding. If that wasn't depressing enough, nothing they have done has helped the pain.

I have considered a hysterectomy for many reasons. One is I am at the point that I don't care what it takes as long as i don't hurt anymore. I have had painful periods since I began menstration at the age of 11. I would spend at least a week at home because of the pain. I assumed at that age that it was norrmal but I was to shy to talk to anyone about it. I didn't began searching for the cause of the pain until one night, during intercourse with my fiance`, I experienced my first sharp debilitating pain in my abdomen and abnormal bleeding. I wasn't due for my menstral cycle for a couple of weeks and once I felt that pain I couldn't move. Not even to go to the bathroom. My fiance` had to carry me so I could try to clean myself up.
We began searching for the cause the very next day. After many doctor visits I finally found a gyno that was able to put the pieces together. A month later I was in outpatient surgery for a diagnostic lap. My first check up afterwards confirmed that it was endo and the scar tissue had attached my left ovary to my pelvic wall and she found a cyst on my right ovary. The cyst was not removed but she did unattach my right ovary. I don't even know if she was right in not removing the cyst. I have tried 3 different continuous birth control pills, only having a period once every three months,since then and intercourse is still painful. I don't "produce" any natural lubricant and when I do have my period, it still knocks me down for at least a week. I suffer from other dx as well as the endo. I suffer from depression since I was 12 and migraines since about the same age. The depression is the reason I don't want to do the Lupron. I have enough mental and emotional problems as it is and I don't need something making it worse. After reading posts from this web site, it seems that either way I go I am going to more than likely suffer from pain, depression, and migraines. Is there not any other way to cope? My marriage is suffering because I can not perform in the bedroom. I don't know how to explain everything to my husband in a way that he would understand. All the research I have read and printed out for myself and my husband has not helped either one of us. I am just as confused as he is and even more tired of the pain.
If anyone can point me in the right direction for research or has advice for my husband PLEASE help. I don't know how much more I or my marriage can handle of this disease.

Hello Tired_of_hurtin

it sounds like you have two distinct problems, which are related ---
one is the pain, and the other it talking to your husband.

Surgery may take care of some of the pain, but as with any kind of surgery there are always risks.

I would suggest you take a look at our Options and Alternatives notes, (see the top of the page, the purple tabs) for ideas which may be applicable to your problem.
There are certainly a lot of women on this site who have suffered from endo - some have done very well after surgery and some have had problems. (but that is true for women who didn't have endo too)

You may want to look at the JOURNALS (left hand side of the page, the pink menu bar) to read entries of those who are in the Endo group to see how they are doing.

You've probably seen a lot of doctors already - have you discussed a hysterectomy with any of them - have they agreed or disagreed?

I think that in this Options and Alternatives forum you will hear from other women who are in a similar position to yours, and you can at least share info and experiences.

With regards to talking to your husband -- that can be very difficult, because this is a sensitive area and feelings can easily be hurt.
We often suggest that members visit www.marriagebuilders.com where they can get some advice on improving their ways of communicating.

I do hope that you can find some solutions soon.

HI tired_of_hurtin

I am so sorry you are experiencing this pain. Your user names explains it all. I also had endo so I do understand some of what you are going through. It can be a very painful disease.

I would recommend doing alot of research on endo before you make your decision. It is a very complex disease and even some doctors do not fully understand how to treat endo. There are some women who have had a hysterectomy for endo and because all of the endo was not removed...these poor women continue to have painful problems with endo even after a hysterectomy.

There are a few things you may want to explore before deciding on a hysterectomy. You are very young and there may be options that will provide long term pain relief while also preserving your fertility.

There is a higher success rate of treating the endo when both ovaries are removed if a woman opts to have a hysterectomy. This would leave you in instant surgical menopause and at the age of 23, the symptoms of menopause can be very unpleasant.

First may be the use of natural progesterone to counteract the effects that estrogen has on endo. Estrogen feeds endo and progesterone inhibits it's growth.Progesterone to treat endo

There is also surgical excision of the endo.Surgical excision of endo

These two therapies (excision with progesterone therapy) may provide the best long term pain relief.

Many women find that a doctor can do a laproscopy and remove much of the endo which may also provide some pain relief.

Here is a list of medications used to treat endo.Endo medications

Here is a link to the resource section that has many wonderful articles on endomatriosis.Resources...click here

I would also recommend trying to find an endometriosis specialist. They deal primarily with women who have endo and are very much aware of alternative treatments.

I understand your need to find relief of the pain. I just think it may be wise to do some research and explore all avenues before making a decision.

Best Wishes

Hi. I too suffer from endo and the unfortunate "bedroom dilemma." One thing I would suggest to you is joining an endo support group like EndoAngels. They have a support group for husbands as well, which would give your husband a place to vent his frustrations as well.

My husband is very understanding for the most part, but still falls short at times. I wish he felt more comfortable talking with other men about his frustrations because I think it would help, as I think it will help your husband.

I recommend researching the use of Natural Progesterone to ease your symptoms. Do LOTS of research! Educating yourself is your best weapon against the endo monster!

One book I found very helpful was "The Endometriosis Resource Book" by Mary Lou Ballweg and the Endometriosis Association. (it might have been Guide instead of Book)

I know how frustrating and painful it is-but please think and educate yourself completely before doing anything as drastic as a hysterectomy. It's not always a fix and IT's PERMANENT.

I wish you the best possible outcome and you can send me a private message anytime!!

I think it's smart that you're doing your research. Knowledge is power. I've suffered from endo for years and I understand the pain and frustration you're going through. My dh tried so hard to understand and he was really patient with me. But he still had a hard time getting it. And I could understand where he was coming from. This is a very painful, confusing disease. And like one of the other women said, it's still not really known what causes it. I've read so many theories but no actual findings. And I went through different doctors, different treatmens, different surgeries ~ a hysterectomy was my last option. I'll be 6 weeks post op tomorrow and now that the pain from surgery is going away, I can feel that the pain I had from the endo is gone. That doesn't mean this fight is over. There's always a chance that the endo could come back. And because they took my ovaries to stop my estrogen production (estrogen has been linked to an increase in endo growth) I've been forced into surgical menopause. So there's more to go through than just a surgery in my case... and many other's. I would read up as much as you possibly can. Talk to your DR in detail, ask any and every question you think of, read some stories of others who have suffered from endo. Learn as much as you can before you agree to anything. Lots of hugs and prayers that you find what's right for you and something that works for you.