Scheduled hysterectomy today; relieved and scared

Hi everyone. Hope you all are feeling well today. Finally after 5 years of suffering from severe endo, I found a doctor who was willing to do a full hysterectomy on a 37 year old with no children. It took some doing here in the south where all women should want babies . . . not saying this is wrong or bad, its just hard to think about having a baby when you don't feel well enough to get out of bed, get dressed and go anywhere to meet someone to have a baby with.

Here's a little of my history because I need some advice:
Had a laporoscopy on 11/7/11 which definitively diagnosed the endo. Took 5 years to get my doctor to understand that birth control pills were not fixing the problem, they were only making me have to pull over on the side of the road on my way to work to throw up. Had my first Lupron shot on 11/28/11 and was convinced it was a miracle. Had my second Lupron shot on 2/20/12 (about 2 weeks before the pain had returned). This time I seriously wondered if I was given a placebo. I started spotting within 2 days and had a full blown period by 2/23/12. Called the doctor; she took me off of the add back progesterone I was on and put me on estrogen. By 2/27/12 I was doubled over in pain (Lortab wouldn't even touch the pain). My family doctor decided I needed to come off the estrogen (it didn't stop the bleeding anyway). I finally spontaneously stopped bleeding on 3/24/12. I have had a horrible migraine since last Wednesday. I saw the gynecological oncologist today who said "why haven't they done a hysterectomy on you yet!" Good question! He also said something that I will never forget: "endometriosis pain is very real and not in your head!" My previous gyn treated me like I am a hypochondriac. Anyway, he scheduled my surgery for 4/18/12 and hopes he will be able to do it all robotically.

So here is where I am: I think I am relieved. I am also terrified because what if I have this surgery and I am still in pain? Then what? I am nervous about the surgery. So I would love to hear what to expect for the DaVinci hysterectomy and what to expect if I have to have the full incision. I am an attorney with my own practice, so I am nervous about the recovery time (but clearly I am losing work days when I am in too much pain to even take a shower). I have gotten so depressed and I feel hopeless. I really, really hope this is the answer I have been waiting five long years for.

Thanks in advance for any responses.

Congrats! I know how it feels to FINALLY have an MD to back you up and validate that YOU'RE NOT CRAZY!!

I also have endo, diagnosed on 11/27/11 via laparoscopy. My endo is covering my ureter. Because my gyn/surgeon is not skilled at the surgery necessary to remove the endo, it is still there. He pushed Lupron, I refused, scared of the side effects I had read about. "Do I need to see an endo specialist or a urologist?" I asked the dr., and he all but stuck his macho chest out "nooooo". So I started on a continuous pill, bled for 10 wks straight! And although nothing was done during my laparoscopy, it was purely diagnostic, I had more pain post op. I called the office requesting a stronger pain med than naproxen (which stopped working about 3mos prior to the lap) they again pushed Lupron. Thats when I did research on endo, extensive research. I learned that the only way to TRUELY remove endo implants is via excision, a skill that most gyns are not equipped with. There are only a few endo specialists in the us that do this surgery. The choice of these specialists is even more limited by insurance, as most dont accept insurance.

Anyway, im having a TLH (total laproscopic hysterectomy) that includes uterus and cervix. Im having the hysterectomy after discussion with my surgeon. He advised that he would suggest a hysterectomy on grounds of fibroids and adenomyosis, but because of my age/childbearing (28yrs old), hes a little skeptical. My husband and I confirmed that were 1000% sure that after 3 kids and a vasectomy, I NEED THIS! so that's the plan...and during the surgery im having all endo excised. Im also havingv a cystoscopy to rule out interstitial cystitis because I have pain with urination sometimes, interstitial cystitis is fairly common among endoers.

I strongly urge you to find an endo specialist. If you don't, your fear may come true. The average gyn will do the hysterectomy and cauterize endo implants. Cauterizing almost affirms that the implant will grow back because it doesnt remove the ENTIRE implant, only the surface, hence the return of pain. Plus you'll have your ovaries which produces estrogen, which feeds the implants.

Please, please, take the time to find a specialist! theres a list of specialists on the endo forum here on H.S. You said you're from the south there's some in GA, TX, NC...that's all I cam think of that I memorized!

Hi, Kopiallie

I am not an endo patient, so I cannot really answer some of your questions. Hopefully some other women with endo can see this post and let you know about their experiences.

I had a TAH BSO, so recovery for me took a bit. I was not ready to go back to work for three weeks post-op, and then it was only part time for another four weeks (desk job). I experienced extreme fatigue, and for the first couple of weeks just showering and getting downstairs to the couch was an accomplishment. I needed help with cooking, cleaning, dishes, shopping, etc. for the first three weeks or so. After this, I slowly took on more things, but emphasize slowly. I am over 10 months post-op and not quite 100% but getting close.

Good luck

(((Hugs)))