Problem returns 9 mos post op. Help!!

This is my first post. Until now I've just read everything I thought might be helpful. But I'm beginning to think my situation is unique.

Severe and sudden onset of abdoninal pain sent me to my GYN in April 2007 who, after some tests, diagnosed me with andenomyosis. I had a vaginal hysterectomy in June 2007, but he left my ovaries because he said "they looked okay."
I am only 49 years old so this sounded reasonableto me.

After my 6 weeks I still had pain on the lower left side, so he went back in (in September) to see if I had developed infection in my left ovary. Except that I didn't HAVE a left ovary (guess it wasn't okay after all). Just some nodules which he removed.

The pain still didn't subside on the left and started to effect my right side, so in December I had my third surgery to remove EVERYTHING. After which he told me I had developed endometriosis on the right so taking everything out was a good thing. Then he gave me a script for Premarin and said "there's nothing left in there to cause anymore problems."

Wrong.

The pain has never been gone totally. And 9 months later I'm learning that Endo can return if the doctor didn't get it all.

I'm miserable. My abdomen hurts all the time and I've gained 30 pounds and I'm so depressed. I fell like I'll never be normal again.

Has anyone else had an experience like this?? And, if so, did it ever get better?

My advice to you is to stop taking the Premarin because hormones can cause the endo to grow back, talk to your DR about this. I just had a TAH/BSO, I am 25 y/o, I had the same severe pain as you, and finally decided to put an end to my misery. My endo was also concentrated on my ovaries, I had alot of cyst too. My DR has removed everything and has reccommended no HRT for 6 months to a year. However because of my family history of cancer I am choosing to not take any hormones. Please talk with your Dr about hormones. There is no cure for endo but there are things you can do to achieve complete relief. I am 3 weeks out from surgery and I feel like my life has been given back to me, I wish I would have done it sooner! I was put into a chemical menopause four months ago. So I have been hormone free for four months now and besides a few hot flashes that didnt bother me at all, life is great!

Hi there. I sympathize with you sister. I am 30 years of age and I had severe endo. My doctor and I decided to take my life to a pain free level with the TAH/BSO and I said I didn't want HRT at all. Estrogen is what fuels endo and if there is any trace of it, it will find it and make it come back with vengeance. Of course, there isn't a cure for endo at this point but there are some things that may help you. I can say that I am sooooo happy I had this surgery and I have been in surgical menopause now for a little over a month. The worst part for me is the hot flashes but otherwise, I feel better than I have felt in quite some time. Please hang in there. We are all here for you and I absolutely agree with what Kelly said - definitely talk with your doctor. Hugs!

I sympathize with you. I hope that you feel better. I had a complete hysterectomy June 3, 2008 (LAVH/BSO). I had a very hard recovery with many UTI's with I never had before this surgery. I bled for nine weeks and the dr said to relax and stay in bed. I bleed occassionally and I still have pain in right and left side and severe lower back pain. As for me, I am trying to get my life back without the drs. I don't know if I will ever feel well. I guess I have given up. I am tired of being sent from one dr to another. Sorry to vent.

I hope you have the strength to pursue.

Keep me posted.

Tophatt10

Hi SCarolinaSand! Welcome to HysterSisters!

The best advice I can give you is to tell you to find an endometriosis specialist if the problem is endo. An endo specialist is going to be the most knowledgeable and the most skilled to help you! It has been well worth my time and money to see one!

Second, do not stop taking your hormones without speaking to your physician. Stopping hormones cold turkey can have negative side effects for some women including heart issues. So please, work with your doctor if you decide hormones are not right for you.

While estrogen can fuel endometriosis creating obvious pain issues, estrogen is also beneficial to our overall health. It aids in the health of our cardiovascular system, bones, skin, eyes, libido, and the list goes on. So each of us haa to consider our whole body when deciding what we need to do with regard to hormones. We will not all make the same decisions as we are not all the same and we each have different personal and family medical histories. Hence, I have both of my ovaries and the plan is for me to keep them as long as possible as the risks of no hormones for me far outweighs the risk of future endo problems.

Are you keeping a journal detailing your symptoms? Have you sought a second opinion about what is going on? Is your primary care physician involved so that s/he can help guide you to the specialist(s) you need to help you get better?

I wish I could tell you exactly what you could do to feel 100% better, but I can't. I do suggest finding a specialist and then determining which treatment plan might be best for you. There are many options, each with their own pros and cons. Lupron, Depo Provera, Danzol, Synarel, progesterone, surgery, pain management, acupuncture, and the list goes on. Each of us find a different treatment method to be helpful.

We do have an Endometriosis Support forum here on the site you might want to check out. There are many ladies there who are dealing with endometriosis issues and you can read about what they have tried.

I wish you all the very best and do hope that soon you can find a treatment plan that addresses your specific needs so that you can feel your best! in there! S