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Questions re: pelvic pain after hyst and multiple surgeries...LONG! Questions re: pelvic pain after hyst and multiple surgeries...LONG!

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Unread 03-30-2004, 08:54 AM
Questions re: pelvic pain after hyst and multiple surgeries...LONG!


I am a regular here, but don't post very often. I get so much just from reading everyone elses experiences and advice. I hope someone has some good advice for me now.

I am 30 years old--happily married for 13 years. I was dx'd with Lupus at the age of 14. After my daughter was born I started having pain in my rt side and finally had a lap where I was dx'd with Endo. The next few years were a blur of meds (Danacrine, Synarel, Provera, BCP' name it, I tried it) I have had so many lap's that I can't keep track. I lost my rt ovary and tube about 6 years ago, which solved the rt sided pain, however the left ovary decided to continue the problems of the rt ovary...The docs keep going in removing endo and adhesions, which despite excisional surgery by some of the best docs in the country, still comes back. I lost my uterus in Dec 2002 through a Supracervical Hysterectomy. I did well for about 3 month, then the doc went back in to look and found endo again. The pain continued to get worse till I traveled to CA last October and had surgery again. This time MORE endo, MORE adhesions and I was dx'd with Intersticial Cystitis in all 4 quadrants of my bladder. At the same time I had my cervix removed (I continued to bleed after the Hyst) and had the one remaining ovary translocated to the pelvic brim thinking maybe that would help the pain in the left side. The surgery was terribly hard to recover from, but I thought I was doing ok till the first part of this year when the pain returned worse than it has EVER been in my life.

The pain is left sided and radiates around to my back and down into the vagina and rectum. I have all the bladder symtoms associated with IC--frequency, burning, PAIN, painful intercourse, hesitancy, feeling of pressure and feeling that things are going to fall out of me, blood in my urine..also have constipation and can't have a bm without pushing on the vaginal wall to "help" things along.

Basically I am a mess! We just moved to San Antonio and I can't find a decent doctor to save my life. I saw one who said I HAD to lose the ovary and blamed ALL of the pain on the ovary --without even examining me! He then tells me I need to not only lose the ovary but have NO hrt. I didn't go back to him. Second GYN tells me I need to keep the ovary at all costs and I need to go back on depo or some sort of "treatment" for the endo--which has NEVER worked in the past anyway. She doesn't know anything about IC or pelvic pain....I have seen TWO urologists who knew next to nothing about IC. I finally saw a pain management doctor who put me on Methadone. I had a bad reaction to it, so now I am on Dilaudid for pain management till I can find someone with a better "plan" to deal with this pain.

I know my case is complicated and not easy...and I thank you if you have gotten this far in reading! Bottom line is I want my life back...I want to be able to make love with my dh and not have pain or have him afraid to even touch me because I will have pain for days after. I want to play with my kids and do normal things without being on narcotics every three hours and having to deal with the stigma of being a "drug addict" because I need pain meds to even get out of bed each day.

If anyone has any ideas or good doctor recommendations I would appreciate it so much. I feel so alone in this--I have pulled away from my friends and family because none of them understand what I am going through.

I guess I should add that I have tried Neurontin, Elavil, Hydroxyzine, and Pyridium for the bladder issues. I haven't been able to take Elmiron because of the cost (no rx insurance and it isn't cheap)

Do you think all of the pain is from the IC? Could I possibly have developed MORE endo or adhesions? SHould I try to have yet another surgery to see what it happening inside of me? Am I NUTS????? Why won't this pain go away????

Thank you all so much for reading this and listening to me!
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Unread 03-30-2004, 11:31 AM

I can't be of any help but I will be praying for you. I have a lot of your symtoms and am trying to get in with pain management.There is a really good IC site somewhere brain fog but you've prob.already been there. I think i also have that who knows.Just got back from a ct of the pelvic today.Wonder why I get some not so nice nurses ?One was extra sweet the other I dont know about.I have scoliosis and lots of back prob.and for the first time in my life I could not get off the table.She just looked at me and said I said ok you can go now. Oh well I will keep you in my prayers.Judy
Unread 03-30-2004, 12:29 PM
Questions re: pelvic pain after hyst and multiple surgeries...LONG!

Dear ((Becky))

I also have a long and painful history with endometriosis... and the last surgery I had also showed endosalpingiosis so I think my body just doesn't know what it is doing down there.

I have been told that as long as you are producing ovarian estrogen you are at risk of endometriosis... and even on HRT there is a risk but much lower than with the ovarian estrogen. In fact, the Mayo doctor who did my surgery told me I was at HIGH risk of endo recurring because I still have my left ovary.

I never had terrible endo (only stage 2)... but it has caused me much pain over the years, infertility problems, and secondary problems like pelvic congestion and adhesions. This last surgery the doctor only found a small amount of endometriosis in the pelvic wall but it was cystic and invasive and causing me alot of pain...

I hope you find an answer to your pain... please keep us posted on how you are feeling and what you decide.

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Unread 03-30-2004, 03:13 PM
Questions re: pelvic pain after hyst and multiple surgeries...LONG!

Thanks for the prayers. I appreciate it very much!

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