20 years old, and feeling like I'm running out of options...

Hello everyone!

Fair warning, this is gonna be a long one. I'm only 20 years old, with no children. I have diagnosed endometriosis and adenomyosis. I've had laparoscopy/hysteroscopy twice so far this year, within six months of each other. The surgeries were performed by two different surgeons, because I moved. My current doctor is AMAZING, and the most recent surgery was at the end of June. I feel like some endo has grown back already (he already removed my appendix because of it), and seeing how quickly it came back last time, I wouldn't be surprised.

But, my biggest problem right now is the adeno. In June, my surgeon severed some nerves to my uterus hoping to help the pain. He told me there was a 60%-70% chance that it would help. It's only been a month and a half, but as far as I can tell, it hasn't made a difference. Sitting for long periods of time (I work an office job) causes really awful uterine cramps. My periods are still unbearable (even though I have the Mirena IUD). The pain has caused me to miss work, and even when I go, it affects my performance. The thing that bothers me the most is that I'm 20 years old, and I can't have a functioning sex life with my boyfriend. He is absolutely incredible, we've been together for two years and I couldn't ask for somebody more understanding and supportive. But it hurts every time we try, half the time so badly that we need to stop because I'm in tears. I know that sex isn't everything, but it is important, and it's taking a serious toll on my self esteem.

I have already tried multiple birth control types (multiple pills, nuvaring, Mirena twice), and surgeries. Nothing seems to be helping. I am seriously considering a partial hysterectomy, leaving my ovaries to (hopefully) prevent early menopause. I'm tired of relying on pain pills, and I'm tired of letting this control my life. I do want a family someday. But I also know that adoption and surrogacy are options, and right now, relieving myself of this constant pain is most important to me.
My concern is finding a surgeon that would be willing to perform this surgery on a woman my age. I haven't spoken to my surgeon about it in great detail, so I don't know if he will. Have any of you experienced this at such a young age? How did you handle it? Are there any options left that I haven't tried? Thank you so much in advance for any advice that you have!

Hystetectomy is too permanent. Please exhaust all your options.

I, too, have adenomyosis and am researching Uterine Artery Embolization. It's supposed to help with both fibroids and adeno. From my reading I have found that women have had full term normal pregnancies after this procedure. The procedure is done by an interventional radiologist, not an ob/gyn.

From what I hear hysterectomy won't solve endometriosis. That might still be a problem. I really hate to see you have a hysterectomy at such a young age. Are you certain the uterus is the only source of your pain? Maybe you need more tests. It would be awful if you had the surgery only to find it was caused by something else. Best wishes. Hope you find a solution.

I also had an endo and adeno diagnosis. I wasn't diagnosed until I had a hysterectomy for suspected ovarian cancer. It is true that a hysterectomy does not cure endometriosis. The only way to successfully treat endo is excision (not burning off) of all endo implants. Most ob/gyns just do not have the resources to do a complete skillful excision and often miss implants or do not remove all the endo. You should consult an endometriosis specialist in that regard. He or she may be able to help preserve your fertility and relieve your endo symptoms. As for adeno, it can be a bit trickier. Here are a couple articles that may help explain adeno and how it is diagnosed and treated:

Adenomyosis and Pain

Adenomyosis and Treatment Options

Adenomyosis and Endometriosis

The second article does list a few options that you may want to try in order to save your fertility. We have had several members her in their 20s, so you are not alone. Please consider exhausting all your options before resorting to a permanent surgery. It was traumatic for me to lose my uterus when I was 45.

Here is a link to our endometriosis articles: Endometriosis articles. They may provide info that can help you. They certainly helped me. Also, here is a link to the endo forum where you can post your endo-related questions and read what others have posted: Endometriosis Forum.

You are doing the right thing by researching and asking questions. No matter what, always seek a second opinion before having a surgery. Good luck with whatever you decide. If you have questions or concerns, there is always someone here who can relate.