So sad that I will need a hysterectomy

Hi there
I have stage V endometriosis that is all over my uterus, bowel, kidneys, Colon and gall bladder.
I have had a laparoscopy to burn off some lesions and am currently undertaking chemical menopause implants.I honestly don't know which is worse, the severe pain of endo, or the terrible side effects of the treatments? :/
The chem menopause I'm on causes me to faint reguarly and throw up in the mornings, and apparently this is just a taste of what's to come after the hysterectomy. My question is does it stop the pain?? I'm only 30 and I've also heard there can be quite nasty side effects to the hormone replacement therapy?? Has anyone come out the other side of this, happily??
I'm also so sad I won't be having more children, my heart just breaks that my 6 yr old son will be the only one.
Feel very sad and sorry atm, would love to hear any positive feedback.
Thanks so much
Tarni

I am glad you have found us and I hope we can offer you helpful information and support right now!

If you are using a medication like Lupron to induce chemical menopause, there are side effects. Some of them can be combated with low dose add back therapy so you may want to ask your surgeon if that is an option for you.

Also, initially there is a surge in hormones which can worsen your endometriosis pain. Once your ovaries stop producing estrogen, the theory is that your endometriosis implants will subside and thus the pain will decrease. Unfortunately, this is effective for some, not for others. Regardless, medications that induce chemical menopause do not cure endometriosis.

Surgical menopause is no picnic and it can be complex with endometriosis in the picture. While you need estrogen for your overall health, that same estrogen can fuel endometriosis. On the other hand, going without estrogen doesn't necessarily resolve the endometriosis issue as any remaining implants can create their own estrogen.

That said, there is hope and you do have options! In fact, if you look for an endometriosis specialist it is also possible you could preserve your fertility for a time, allowing you to have another child. Those doctors are trained to excise endometriosis from multiple areas including the bowel, bladder, kidneys, etc. So I would STRONGLY encourage you to at least consult with one before you head into OR for a hysterectomy. There is a link at the top of this forum with the names of some surgeons who have helped other women with endometriosis, and there is also an article with tips for finding a doctor who can help. They key for treating endometriosis is the skillful excision of the existing implants, not the removal of our reproductive organs.

I did have my hysterectomy when I was 25 because of endometriosis (it covered my uterus) and we couldn't stop my bleeding. I did not choose to see a specialist at the time for a number of reasons. My local OB/GYN was able to do a pretty good job but he had to leave endometriosis on my bowel walls. Years later when I had finally had enough, I traveled to an endometriosis specialist who excised the endometriosis from my bowel walls. He also cleaned up all the new endometriosis and all the adhesions. Since then, I have been endometriosis pain and symptom free, even with both of my ovaries!

Feel free to check out the endometriosis information we have linked to the top of this forum, and do post any questions or concerns you may have. You can also check out the rest of the site to learn more about hysterectomies in general.

I do wish you all the very best!

Thank you very much for all that information. I'm so glad to hear you are doing well after your surgerys.
The chem menopause I'm on is Zoladex or goslerin, my doc is a gynecological surgeon and has been very good so far. We are trying this first to see how I go and then looking at options for a hysterectomy.

I will definately look at all the other forums, it's nice to know I'm not alone
Some days it can be very hard....
Thanks again

I have had 2 laps and went through Lupron treatments that put me in menopause 3 times. The treatments were hell the first time, but I did feel better for awhile after going through it. The second time I took the adback therapy and the treatment wasn't nearly as bad as the first time. I wasn't ready for kids when I was finally diagnosed at age 23 after 11 years of suffering and the surgeries and hormone treatments helped me until I was ready for kids. My current OBGYN whom I have had for over 6 years now specializes in endometriosis and fertility, so he was able to do the best things for me to preserve my fertility and manage my pain until I was ready to have kids (which we did right after we got married-following surgery) I had my kids only 20 months apart and being pregnant and breastfeeding seemed to keep my pain away for awhile or at least to a minimum as I did have hard pregnancies. After I stopped breastfeeding my daughter, my pains all started back up again after a couple months. I am now having a hysterectomy as I was also diagnosed with Adenomyosis in March. I would recommend if you still do want to have another child to find a doctor that specialized in Endo if yours doesn't and see if it is an option for you. I had a treatment of Lupron for one month to hold me over until I was on my husbands insurance and then had a Lap to get everything cleaned up right after we got married. My doctor said my best chances of pregnancy were the 6 months following surgery. We got pregnant twice in 4 months as I lost the first pregnancy. I can't tel you if the pain gets better after a hysterectomy yet as I am not having mine until August, but I do encourage you to try your other options first if you can. If the chemical menopause is horrible right now I would definately ask about the addback therapy. It made my second round of treatments way more bearable. I am now at a point where I am ready to get rid of my insides so I don't have to feel them there all the time. It was not a decision I came to lightly as we were debating another child as well, but I hope it makes my pain go away for good. I know hysterectomy is not a cure for endo, but it helped my mom a lot and she said it was the best thing she did for her pain. Good luck to you in this hard decision. I hope you find relief from your pains soon.