endo and fibroids or adenomyosis.

Hi all- I am new here. I was diagnosed with endo in 1991. I have been on and off birth control pills over the years, and have given birth to two children. I also nursed both of them, so that suppressed my cycles. I am now 42 and am having severe pelvic pain, and issues with frequent urination. I had an ultrasound last week that showed a heterogeneous uterine lining. My doctor could not tell if it was from fibroids or adenomyosis. The exam showed that my uterus and right ovary were both enlarged and painful. He was not sure what was causing the ovarian pain, but said it could be endo that did not show up on ultrasound.

He suggested a hysterectomy to remove the uterus, cervix and right ovary. He said I could "try" other things, like continuous birth control pills, or a lap to look for endo, but he thinks ultimately I will end up with the hysterectomy.

I am not entirely comfortable with doing a hysterectomy without knowing exactly what is causing the pain. If it were definitely fibroids, they could do alternative procedures.

I am hoping to get a second opinion, but I do not know of any good doctors in town right now who I would consider "experts" on things like endo. So, I am looking for another doc, but, in the meantime am seeking advice from other women who have "been there". If anyone has any thoughts or suggestions, I would appreciate it.

I wouldn't get one just based on thinking you won't have pain.i had fibroids and I thought I wouldn't be in the same pain after mine but two weeks after my hysterectomy my same cycle pain came right on schedule,I am glad I had it done because of heavy bleeding but now i wonder if the heavy bleeding was caused by whatever this pain is and not the fibroids.I'm just waiting it out for awhile now since I don't want another surgery so soon but later I plan to have another ultrasound to see what this pain is from.Again,it's nice not to have to worry about planning my life around my period...being pain free would have great but it didn't happen for me.

I would not get a hyst yet....no way.
Especially if you have never had a lap at all. It could simply be fibroids, and a hyst isn't going to solve that complication.
I've had cysts, fibroids, endo, vericosities on my uterus. It was inevitable that i finally reached this point. I've been dealing with the pain since my first birth.....15 yrs. I would encourage a lap, with the investigation, you'll know for sure what's going on....and can then make a decision where to go from there. In whatever you choose, i wish you the best of luck. Hang in there sister!!

If you have already been diagnosed with endometriosis, I highly recommend seeing an endometriosis specialist--specifically specializing in excision surgery--before even considering a hysterectomy. There is a list of them in the endometriosis support forum. Hysterectomy is not a cure for endo, and there are cases of women having completely unnecessary hysterectomys, only to have their endo return. In general, most (not all) general ob/gyns are not qualified and do not have the skills to deal with all of the places that endo can grow outside of the uterus.

Also, adenomyosis cannot be diagnosed/confirmed (although it can be suspected) except through examining the tissue under the microscope after hysterectomy. Endo specialists also tend to be specialists in adeno and fibroids. Again, I highly recommend seeing one of them before you make any decsion.
drjp

Thank you for your replies. I am trying to find another doctor for a second opinion locally. I would love to go to one of the endo experts on the list, but I live in Colorado and there is no one around here. I have been trying to get some recommendations for local doctors. I have a couple of names in my city, so I plan to get a second opinion.

I forgot to mention that I also have endosalpigniosis. I had an abdominal hernia a couple of years ago that had to be repaired. I had fallopian tube tissue that was incarcerated in the hernia. So, that may also be an issue.

I definitely do not want to have the hysterectomy if I can avoid it.

I think you are very wise to be looking for a second opinion and for not rushing into a hysterectomy.

I have recently posted an article at the top of the Endometriosis Support forum that offers suggestions for finding a doctor when traveling to a well known endometriosis specialist is out of reach.

Keep in mind, as long as any endometriosis is not excised, it can continue to be a problem. Thus, many of us who didn't start with a doctor who specializes in treating endometriosis end up with multiple surgeries. If we had started with the specialist, we could have avoided repeat trips to OR which are hard on our body and pocket books.

As you know, there are alternatives for treating fibroids besides a hysterectomy. A hysterectomy will not cure endometriosis. If your bladder issues are not related to your uterus, you would continue to have painful urination following a hysterectomy. Adenomyosis is hard to diagnosis prior to a hysterectomy so having a hysterectomy for it may or may not be successful. (If you haven't had one, you might ask if an MRI would be helpful as more doctors are able to use MRI as a diagnostic tool for adenomyosis.) So all in all, a hysterectomy at this point does not sound like the best answer for you, or at least not the complete answer!

As far as your bladder, have you ever visited with a urologist? Has anyone ever mentioned Interstitial Cystitis? Many of us with endometriosis are also being diagnosed with IC. My endo specialist was the one who diagnosed mine via a cystoscopy done prior to a lap for endometriosis excision. It might be something to check into.

If you are not keeping a symptom diary, I would suggest you do so. This could help you and your medical team determine what is causing your symptoms and what your best treatment plan(s) might be!

You may want to take some time to browse through our Resource Database. We have a wealth of information there on all of your possible diagnoses. Additionally, you can check out www.suggestadoctor.com for names of doctors in your area who might be able to help you.

I hope you will keep us posted!