Hysterectomy at 30

Hello. I had a laparoscopy done 3 weeks ago for chronic pelvic pain. My doctor found that my uterus is being pulled up and is completely attached to my abdominal wall at my c-section site. He also mentioned endometriosis of the uterus. At my post-op visit Monday, he suggested a hysterectomy. I am 30 years old and confused. He stated that if he tried to separate the uterus, he would have to open me up like a c-section but mentioned that it would grow back together. He did not want to put me through this so he suggested that the hysterectomy would be the best option for me and he would leave in my ovaries. I do not want to live in this pain for the rest of my life either. I did not ask many questions as I was at a loss for words. I am not sure if he does take out the uterus, if this would relieve me from my pain. Will the endometriosis grow in other areas? Does anyone have a similar situation or know of someone that had this? I don't know what to do.

My situation was not similar, however I did have my hysterectomy for endometriosis, namely for the endometriosis that covered my uterus.

First, before scheduling any surgery, be sure that your doctor is very knowledgeable and skilled regarding endo. Many GYNs, mine included, do the best they can but they cannot remove all the endometriosis in the best manner. They do what they have been trained to do but sometimes that is not good enough and endo can then be a problem down the road. If at all possible, at consult with an endometriosis specialist before making your final decision. It can be well worth the time and money and possibly safe you future surgeries.

If the endometriosis is not completely removed, you can have endo issues down the road even without a uterus. To complicate the picture, the endo grows thanks to our estrogen. However, estrogen is beneficial for overall health, especially when we are younger, so removing the ovaries is not necessarily the right answer either.

I would suggest taking some time to read through our Endometriosis Resources. I would also suggest checking out our Endometriosis Support forum. You will find that we each had to make different decisions based on our specific circumstances.

I had to have my uterus removed as that the was only way to address the endo covering it. I did retain my ovaries as that was best for me based on my age, health, family history, etc. My GYN was not able to remove all of the endometriosis so I did deal with pelvic pain for years following my hysterectomy. The pain would come and go, sometimes be no big deal, sometimes a pretty big deal. When my pelvic issues finally became a bigger deal than the rest of my health issues, I headed to an endometriosis specialist and had surgery over seven years post hysterectomy. So far, since that surgery, I am doing very well! Again, I kept my ovaries.

I would suggest you take some time with your decision. Make a list of all of your pros and cons. Ask questions. Seek additional medical opinions. Talk to your primary care physician. Ask if there are other treatment options and what the success rate might be. Having the uterus connected to the abdominal wall is going to make things a bit tricky.

I wish you all the best and I hope we can offer you support and information to help you during your journey! Take care! S

Thank you for your response. May I ask you how you found an endometriosis specialist? Did you ask your insurance company? I feel akward asking my doctor. I feel like it's an insult even though they may not even care.

When they did my lap two years ago, they found that my uterus was attached to the abdominal wall, much like yours. They were able to cut them apart and put a mesh material that helps discourage further adhesions from from forming during the lap - they did not need to a separate surgery.

I think at the very least you should be getting a second opinion in order to clarify exactly what is going on.

Were you diagnosed with endometriosis? Did they tell you how your uterus attached itself to the abdominal wall? Do you still have pain (from the endo) after getting the mesh? Did you see a specialist or an OB/GYN? If it was a specialist, may I ask what kind so I can go back to my insurance to inquire about a second opinion. Thank you SOOO much for youe feedback.

Yes, I was diagnosed with endo... they did not find any actual lesions, but the adhesions, my symptoms, etc all point to endo. The mesh was not for endometriosis; it's a special thing they put in to try to prevent further adhesions. I saw an OB/GYN. And yes, I still suffer from pain, because they didn't actually remove any endo. HTH

My first lap...I was diagnosed with severe stage IV endo that was in my cul-de-sac, uterus, cervix, bladder cap, ovaries and on my bowel. I had the nasty black kind with fluid build up. A majority of the endo was removed but some micro endo was left along with some fluid. Mine progressed rapidly over the course of a year.

Do you still suffer from pain? Did they try hormone therapy?

	Quote:
Originally Posted by ChattyPatty May I ask you how you found an endometriosis specialist? Did you ask your insurance company? I feel akward asking my doctor. I feel like it's an insult even though they may not even care.

Research, research, research, research! I actually researched for about two years as I knew that things were worsening and I wanted to be prepared for when I had to take the next step. I knew I would need to travel out of my area and possibly out of state so I wanted to choose a doctor who I felt had the skills I needed along with a great bedside manner. My GYN was not offended that I went to an endometriosis specialist (<--- you can use that link to find some of the very top notch endo specialists that I have learned about but the list is not all inclusive). Any doctor should want you to seek a second opinion before making the decision to have a major surgery. Some doctors and insurance companies even require you to seek a second opinion.

When I hit the stage of needing to do something abut the endometriosis again, my GYN told me he couldn't do anything as I was outside is skill and treatment range. Both my endo specialist and I have been very pleased that my GYN has been so careful to stay within his limits rather than creating more issues by trying to treat outside his skill range. My endo specialist says he runs into situations a lot where a non-skilled surgeon tries to do more than s/he really has the skills to do and the end result is worse than the beginning. It is not that the surgeon is trying to make things worse at all, but endo is just messy and complicated and requires some really superb skills at times.

My insurance company does not cover one single endo specialist. And in fact, my endo specialist isn't even contracted with any insurance companies because of the hassle. However, I was able to appeal my bills with both insurance companies I have had and they have kicked in and paid higher amounts though not as much if the surgery had been with an in-network provider. It cost me extra to see the best of the best and it was VERY worth it!

I wish you all the best as you learn all you can about endometriosis and adhesions. Take your time, keep asking questions! s

I really do thank you for all of your time and input. It really does help to hear from other people as it makes me feel better about my situation.... to know that I am not alone. I will definately look into a second opinion as well as finding an endo specialist hopefully in my area. As times are tough right now financially (as it is all over the country) it will not be easy for me to put money out of my pocket for a specialist that is not covered under my health plan. But I will try everything I can