I am going through hell. I had a total hysterectomy about 2 years ago. I had lots of endo and adenmyosis as well. The only thing I have left inside is my cervix. At any rate, I got pain back and had a laproscopy about 4 months ago where the doc found more endo. About 2 months later it came back and the pain is horrible. My doctor just put me on depo-provera and I am wondering if this is actually something anyone else has done. I am wondering if the depo is the right avenue. I am also wondering if I should seek advice from another doc who is not a gyn. The pain is always on the lower left side...never moves. Mostly burning/stabbing pain. I am so sick of this and I just want to cry because I feel like I am getting nowhere. Can anyone out there give me some advice....and if anyone has had similar things happen to them I would love to hear about them!
09-21-2005, 06:23 PM
I am wondering if you still have your ovaries? A total hyst with removal of the ovaries would be a TAH/BSO..any endo you still have..and it can be everywhere as you know..would react if you still had your ovaries to the hormonal changes each month..you can still have estrogen stored in your body that could be causing endo to flare up, but usually they take your ovaries if you have bad endo..so..if they left your ovaries..getting the depo shot would act the same as if you were using it for bc..you would not be "ovulating" and your body would stop the monthly changes of hormones..
Could you have adhesions?? That's not uncommon and with an arthoscopic look they can see adhesions..unfortunately...cutting them up just tends to create more adhesions..i guess first, do you still have your ovaries?? both?? Sorry you went through the hyst to still end up in pain..
09-22-2005, 04:58 AM
I do not have my ovaries. They took one in one of my lap's, and the other in the hyst. I had cycts on them. However, my doc still tends to think that the endo could have spread prior to the hyst and is still elsewhere. Ughhhhh.
Any words of advice?
09-22-2005, 06:05 AM
My question to you is if you had a total hysterectomy, why do you still have your cervix. That is very unusual to leave the cervix behind. I had a hysterectomy back in 1994 (uterus and cervix gone) left my ovaries. Anyway the pain you feel is probably from adhesions and scar tissue. I have the same problem with pain and tenderness on my right side from scar tissue as a result of the hysterectomy and bowel obstruction surgeries. It does scare the heck out of me whenever the pain gets bad because I fear that I am about to have another bowel obstruction.
Try warm compresses when it happens and take Advil or Motrin. That sometimes helps.
09-22-2005, 06:17 AM
have you had any sort of radiologic testing done to see the 'whole" picture?while your pain could be stemming from what the above posters have stated,it could also be stemming from something that occured during the surgery itself such as nerve damage.i really do think that getting a second opinion would really be the best next step.you need a fresh doc with a new perspective on your overall condition and the possible reasons for your pain.i would seek out another gyn doc or even an internal medicine doc.or maybe even both depending on what you find out.trying to track down the real cause of unrelenting pain just sucks.sometimes the problem is obvious but sometimes,as in your case, it can be a long drawn out process of testing and elimination.hopefully a new doc will have new ideas and possibilities for you and you will find the culprit and be able to control whatever it is.hopefully,it wont take much longer.Just stay strong and lean on others for support.without my firends and family helping me out from time to time and just being there for me, I know I would have just gone over the edge many times dealing with my particular nightmare.We are always here for you and willing to listen.Hang in there,Marcia
09-24-2005, 12:44 PM
Same thing here, tah/bso in 2001, same left sided pain.
No hormones, no ovaries but after two more laps, still have endo and adhesions. The adhesions are the biggie; left side from large bowel to pelvic wall.
Post hyst, they put me on Lupron injections (smilar to depo provera i think) but no benefit to me and some ungodly side effects.
Advil and my "blue buddy" (microwave heating pad) were my best friends.
You have to push the dr's sometimes to make them understand you're really in pain. I went to PT and pain mgmt and the combination helped.
I was taking percocet and 600-800 mg ibu at that time.
(currently 6 wks post op fusion so I can't take the ibu now)
I hope this helps you to know you're not alone. I'm not shy so feel free to ask me just about anything...
09-25-2005, 07:56 PM
Wow Sabrina...I am so glad to hear I am not the psycho patient that I sometimes feel the doc's think I am. How would I get into a pain clinic? I don't need a referral due to my insurance, but I have no idea how this works. It seems like the only thing that helps my pain is percocet, but when I ask for some I feel like the doc thinks I am a crazy addict. No matter what I do I feel like the doc thinks I am crazy.....
I have had antrasound and a Cat scan, but nothing showed up. Is surgery (yet again) my only option?
Thank you so much for your time and words of encouragement (all of you) :)
09-26-2005, 05:48 AM
Just talk with your doc about it.i do believe that despite what your insurance states,you actually really DO need to be referred by your doc to the pain clinic as the clinic will only accept certain types of patients per their own set of criteria.But I don't see why they would not take you and at least give it a shot.Your doc should know just what pain clinic to send you to.Good luck,marcia
09-26-2005, 12:45 PM
I can very much relate... my pain started just over two years ago as severe pain (left side only at first) when I ovulated. I had an ultrasound.. nothing was found. I got pregnant a few months later and the pain went away for the most part although there was one weekend around 18 weeks where I was in so much pain I went to the ER. They did an ultrasound and bloodwork and couldn't find anything wrong. The pain lasted about 48 hours total and was gone by Sunday afternoon, no explanation or diagnosis. After I gave birth, my first ovulation was horridly painful and the pain lasted for 4-5 days. I had previously had been diagnosed with IBS (diarrhea prominent) about 3 years earlier so I went to see my gastroenterologist thinking the pain was somehow related. He asked me a bunch of questions.. I realized my pain was totally related to my menstrual cycle and he suggested Endometriosis as a cause. I went to a couple of different OBGYN's and had 2 laparoscopies and I did have stage 2 Endometriosis. In the meantime my regular OBGYN referred me to a pain mgmt clinic and I began long acting narcotics which I'm still taking. The medication was and is a blessing although the pain continued getting worse by the month. Finally I went to see Dr David Redwine this past June; he is considered the "top" endo specialist and uses an excision method to remove endo tissue rather than laser like every other OBGYN. He recommended that I have a hysterectomy because he suspected I had adenomyosis and I opted to have my ovaries removed also. Since then, I have had a hard recovery but I don't regret having it done. My pain days are fewer and the pain is less intense; however I have absolutely no energy most days and I felt like I had the flu for the first 2-3 months afterward. I'm only 31 so I think my body is having a hard time adjusting to hormone replacement therapy.
Most of the endometriosis I had was on my sigmoid colon, in fact I had a bowel resection during my hysterectomy. I continue to have pain on most of the days I have bowel movements and did go back to my gastroenterologist. There was a point that I pretty much stopped eating because anything that caused my digestive system to start contracting would hurt and I had no appetite anyway. I lost 10 lbs which is cool... I'm still 10 lbs overweight but I suppose it's not the ideal way to lose weight. I was afraid I had something else wrong like Crohn's but the gastro. said Dr Redwine would have seen evidence of it during the surgery. Anyway, he did blood tests and started me on Zelnorm almost 2 weeks ago but I haven't really noticed a difference yet. You only take it for 3 months so we'll see how it goes. I had MANY bowel movements this past Friday and hurt like hell.. in fact I was ready to stop taking it but then I figured maybe my body was just getting used to the medication so I'm still taking it and things are OK so far.
I guess what I'm saying is that you should also look into the digestive/intestinal "end" of possibilities as well as gynecological sources of your pain. Either way, I haven't exactly found a cure but I am feeling better than I did before surgery. Take care of yourself, rest up and I highly recommend going to a pain management clinic. My OBGYN referred me.. it all depends on your insurance but usually you need a referral to get into one. Keep us posted!!
09-27-2005, 08:09 AM
Thanks again for your continued support and words of advice. I went to the most wonderful doctor yesterday. He is a surgeon, but he specializes in the abdomen. He was a sweetheart and was so supportive. The first thing he did, without me even saying a word, was to feel my neck. He noticed a swelling and found a little nodule in there. (my mom had mentioned the day before that it looked swollen). He is sending me for an ultrasound of my neck for that and said not to worry that it is probably just a thyroidal issue that will go away.
When he checked out my abdomen, he said that I could have gotten a piece of endo stuck in the muscle during my hysterectomy. It has a name, but I can't remember it. He is sending me for an ultrasound for that as well.
At any rate, I walked out of there with such a feeling of relief. He was so understanding and actually took the time to listen to me thouroughly. He gave me a prescription for a pain patch to put on my left side where the pain is and gave me some percocet if I need it.
He was truely a gentleman and it is so reassuring to see that the medical world does have feelings.
I will let you know what happens after the ultrasound.
10-12-2005, 07:00 AM
Well, I had my ultra sound and it came back negative. I was in the ER this weekend with extreme pain, yet again. The doc there told me to take something to empty my bowels and see if that helped. I did that, and today, 3 days afterwards, I am in pain yet again. ALWAYS on the left side. I feel like I am at a dead end. Everything comes back negative but I still have extreme pain always in the same spot. It seems like I need pain medication more often than not. Please help.....