endometriosis, young and scared

Hi,
Founds this site and it looks like it will be so helpful. I said I was young, meaning 31 which I think is still relatively young.
I am going to have a hysterectomy and a bowel resection soon and I am finding myself really scard.
I have stage 4 endo and no kids unfortuneutly, fertility is out of the question. The endo has gone all the way through the bowel wall and is a mess. The bowel specialist said he can't do a bowel resection and take care of it safely without doing a hysterectomy. And the endo specialist said if I chose the hysterectomy there will be a much less chance of reoccurance. I have had 2 past surgeries and it does keep reoccuring. I am in alot of pain and bleed very heavy and just feel a mess overall.
My concerns of a total hysterectomy are all the things that happen afterwards not really the surgery itself. Will I turn into a crazy woman? I have been reading of possible depression, weight gain, increased blood pressure, lack of sex drive, less pleasurable orgasms, etc..... I think I can take hot flashes since I was on Lupron once and I got those. I don't know if I will be able to take hormones right away due to the endo. He is doing excision surgery and he said it depends if he feels he got it all. If not, I will wait 6 months or so.
Also I didn't realize how much I still was hoping for a "miracle" baby, but I know that is not possible really. Can't afford IVF, and my insides are shot. We are looking into adoption but that is expensive too.
I just don't want to change into a different person afterwards, usually I am happy go lucky but since making this decision I am so scared and just wish I could have some advice and insite from other people that have been through this.
Thanks so much and good luck to all of you. Oh and one more thing, I am wanting to know if any of you have kept your cervix? I read that intercourse is more satisfiying WITH it.
Thanks again, Tiffany

All those worries are considerations, but you also have to consider how your life is affected now by the endo. To be needing this type of surgery, it must be fairly debilitating. You say yourself you are "a mess". You have to measure the *possibility* of depression, weight gain and less enjoyable sex against the *absolute surety* of the pain, bleeding and constant need for surgeries you have now.

I don't know about you, but for me, endo meant painful intercourse and it made sex extremely difficult and rare for me. The hormone imbalance and hormonal treatments made me gain weight, have mood swings, hot flashes and terrible PMS, and eventually affected my digestive system so much I now have colitis. I tried to get my doc to give me a hyst for almost two years. I feel like anything menopause can dish out can only pale in comparison to what I've gone through with the endo treatment.

I am 33, no kids, and had a total hyst plus ovaries and tubes removed 16 days ago. Due to the endo, I am not on any hormones. I have had a few hot flashes, but no mood issues, a little weight gain (probably more due to not being able to exercise and eating ice cream than anything else) and no insomnia. In fact, I slept in until 10:45 this morning. Other than some minor pain from the surgery, I feel fabulous.

I'm sorry I can't say anything about the infertility part of your concerns. I never wanted to have kids, so that part of the hyst was not an issue for me. I have done some research into adoption, though, and as long as you are not concerned about getting a brand new baby who looks just like you, adoption can be relatively inexpensive. I'm not sure where you live, but I know in Canada, you can adopt a 6+ month child from places in the Caribbean for only a couple thousand dollars plus the cost of a plane ticket and a weekend stay. In the states, older kids are easy to find, and all their medical expenses are covered by the gov't which of course is a big deal there. If those options are not available, there is always fostering - sometimes tough emotionally, but relatively easy to get into financially.

All this to say - there is always a solution, but rarely without compromise. You have to weigh the pros and cons of staying where you are to the possibility of where you want to be.

Hi Tiffany,

We could be twins. I am 32 and had stage 4 endo as well. My DH and I tried for that "miracle baby" as well and we finally decided that it just wasn't going to happen. I ended up seeing a therapist a month prior to my surgery because the grief was just overwhelming. I was so thankful for this site.

I had a total hyster in September- everything except my cervix was removed and I can honestly say I haven't had a single regret. I haven't felt better in my life. I no longer suffer from pain, fatigue, mood swings (well okay.... maybe a few), and being out of pain has changed my life.

Everyone is different... I can only share my experience-

I kept my cervix and am very thankful I did. It was always a challenge for DH to get me to orgasm and after the surgery it was not only quick and easy but much more powerful for me. My Dr. told me that my cervix would not only help me with sensation but would help with lubrication as well. Even after the surgery lubrication can be a problem.

Due to the endo I can't take HRT so I have hot flashes and night sweats but I would rather have those than the pain. I try to drink plenty of water and sleep in light weight cotton pj's- it seems to help and I always keep a spare pair of pj's close to the bed so I can get comfy quickly. My Dr. put me on an anti-depressant due to some minor depression after the surgery and it's helped with the hot flashes as well.

I have noticed dry skin, lack of lubrication, hot flashes, night sweats, minor depression and some weight gain- and can honestly say it's nothing compared to living with endo. I wish you well in your decision and if you ever need a shoulder don't hesitate to use mine.

Best Wishes,
Helen

Thanks so much both of you for responding. I can honestly say I don't think I can take this endo pain, fatigue and other sypmtoms that go with it much longer, that is why I have opted for a hysterectomy also. It really helps there are other people out there that are going through similar situations.
Today is the first day I am more positive about things and I think it is because I found this site! I was reading a book yesterday that just told horror stories about a hyterectomy and not to have it done unless it was a life threatening situation and I was like Oh MY!
Yes, Helen, alot of things are very similar me and you! We should try to keep in touch!
Regarding cost of adoption, my brother in law is adopting from Guatamala and it is costing them 29, 000 dollars! I don't think I could emotionally handle being a foster parent so I don't think that is a consideration. I would want a baby less than a year, so an older child really isn't a consideration either at this point. Thanks for your suggestions Julie.
Well, I will definetly keep reading on here. There are so many positive stories and it has really uplifted me it doesn't have to be all gloom and doom. Thanks again, Tiffany

Tiffany,
From reading your entry and the responses to it I feel that I too have finally met women with the same problems as me. I am 40 years old and had my first surgery for endo when I was 21. Since then I have had 6 other surgeries/procedures and was on lupron for 1 year. I am having my hysterectomy on 4/12. When my doctor first said he would do it I was so happy and relieved, but now it seems so final. I know that I can't continue to live with the all the pain from the endo and the scar tissue from prior surgeries forever but I'm scared too. Glad to know I have a place I can come to talk and get real advice. Take care and hope to talk to all of you soon.