Did you have a total hysterectomy (both ovaries removed)? Since you say you've been on HRT, I assume they were removed. However, if your ovaries were left in, then your body will continue to produce the hormones that affect the growth of endo.
If your oaries were removed, then you may have ovarian remnant syndrome, which is when a small piece of ovarian tissue is left and continues to produce hormones just like an ovary would. The fact that HRT seems to make your situation worse, coupled with the fact that you have adhesions, makes me wonder (although I'm not a Dr) if you do have a remnant left.
Endo can be extremely difficult to find and excise at surgery, and only the most meticulous endo specialist/surgeon is capable of a thorough job. Hysterectomy is only helpful for endo when ALL endo has been excised - otherwise the endo just grows back (in quite a few cases).
There is a support group endorsed by obgyn.net at http://forums.obgyn.net/endo that you may find a good source of information.
There is a promising new barrier being used in Europe and Australia called Spraygel. It is currently under clinical trials in the U.S., but not approved for use yet. Please search the archives of this forum using Spraygel as a keyword, and you will find lots of info.
Welcome to the IAS forum - you are now surrounded with the undersanding of others who are in a somewhat similar situation. We will do our best to give you the support that you need.
Wishing you pain free moments, hours and days. Clare
At Tue, 11 Feb 2003, Carmela wrote:
>
>Hi,
>I am new to this site but so glad that I found it. I recently had a
>hysterectomy for chronic abdominal and pelvic pain and stage 4
>endometriois. My life has been a nightmare with this for years. I will
>be 44 in a few months.
>Of course each time they did a surgery there were lots of adhesions and
>they had to be cut down. During my second lap for endo they severed the
>inferior epigastric artery which caused a lot of bleeding. they were
>not able to stop the bleed through the scope so they had to topen me off
>and clamp off the bleeder. The clips they used were left intentionally
>behind. After that my pain was chronic and worse. Lupron seemed to
>help by shutting me down. Three more surgeries were needed after that
>botchup because of pain. Ultimately I needed the hysterectomy and I
>don't regret doing it. I no longer have horrific ovualtion with ovarian
>cysts and terrible menstruation. HRT only made matters worse so I
>couldn't take it. For 4 months after the surgery I was actually feeling
>better. then.........it all started again. because of other health
>problems I was having my dr thought it would be a good idea to take some
>hrt.I was reluctant because of past history but finally gave in to their
>instance. Immediatley after i started the hrt the swelling and pain
>returned! I mean by day 5.I had to stop but a few weeks later my
>endocrinologist because of thyroid and other problems wanted to try a
>much lower dose and a natural hrt. I figured natural would be
>ok...WRONG!! within 5 days the same thing happened byt the pain was
>worse and continued for a much longer time. I developed bacterila
>vaginosis which felt like i had been hit with a baseball bat and then of
>course yeast whcihc was very irritating and could imagine the
>iflammation inside. The dr. said this was ll die to the HRT changing
>the ph and allowing things to grow....oh well. It's now almost 3 months
>and i still have pain. 3 weeks ago my new gyn gave me a shot of Lupron
>to try and burn out any endo that may have flared up on the bowel or
>intestines.I am still in pain. last night i spoke to him and told him
>that i think it maight be adhesions. He said to give the Lupron at
>least 3 months. If there is a little endo on the bowel it could cause a
>lot of pain. But, yesterday after a bowel movement I felt terrible
>tugging and kinking on the right side. The only thing that got it to
>calm down was soma. I don't know what to do anymore. The pain is
>nightmarish, getting my lwer back and belly area. It is causing
>swelling and problems after I eat during digestion and of course pain
>and crampin with bowels movements.
>If it is adhesions, he said that i might need another surgery. That
>would be suregery #6!!! And there is no guarantee that it would help. I
>don't know what to do. I'm hoping it is endo flared up by the HRT
>because this way I have a shot at relief. It has worked for me in the
>past. If not.....then next plan. Has anyone had any success with any
>of the barriers they use? MY girlfriend is a nurse in cardiac surgery
>and says they use the mesh barrier now around hearts to prevent the
>formation of adhesions.I would loveot hear back from anyone who has used
>them. Sorry this is so long but I am at the end of my rope anddon't
>know anyone with similar problems to talk to about this.
>thanks,
>mel