Anyone have surgery for endo, now have painful adhesions?

Discussion in 'Fibromyalgia Main Forum' started by painfreesoon, Dec 11, 2009.

  1. painfreesoon

    painfreesoon New Member

    I have Fm, and had endo, and was VERY nervous abouting having surgery for endo, since I have so many knots from Myofascial condition.

    I looked up facts about the surgery, expressed my concer about this very thing with my doctor, so she only made one incesion, and of course they go through the belly button.

    well now 6 months later, I have pain in and arounf my belly button, so much so that I feel like i have an ulcer and intestinal pain.

    had blood work done for food allergies,H.Pylori, etc. all came back normal.

    I don't want to do the upper and lower G.I. right now, to rule out ulcers, etc.

    I do know for sure my belly button hurts, and NOW I found a sight, that said adhesions are a risk, and there is no cure, but pain meds and physical therapy!

    I'm already doing that for my Fm!!!!

    Do I have to love with another painful condtion!!?? I'm in tears, I wish I would have never had the endo surgey, tha would have corrected itself after menopause.

    Now I'm feel like I screwed myself forever.
    I'm so depressed, I can't take any more pain, or health issues.

    Anyone else experience this? Especially those that have Myofascial pain (unlike FM alone, you have your fascial tissue that basically sticks to the muscle creating painful knots and imobile tissue).

    The fascia for those who don't know is, if you picture a piece of chicken, under the skin and above the muscle, that thin almost clear film of tissue.

    Thank you.

  2. painfreesoon

    painfreesoon New Member

    I'm sorry to hear about your pain. It sounds very familar. I find many with FM, don't understand when I talk about my MPS.

    It's nice to (although I'm sorry you have it) have someone who understands.

    I use to use progesterone cream, I managed a health food store before I had to go on disability.
    I might try it again.

    I got flare ups from acupuncture( after 2 visits, I was told I was too tight to work on, plus it was too painful), I got trigger point injuections ONCE! Big mistake.

    The only type of P.T. I can have is especially for MPS. Regular P.T. makes me worse! It's way too agressive.

    I'm thankful for my MPS team, I'm praying they can help break up the adhesions, since they are new, unlike my whole body, whicj took 20 yrs to diagnose.

    Has anything helped you? If you don't mind my asking, what do you do?

    Thanks for responding, just to let you and other's know, typing is painful so I may not be able to personally answer, but will read, and really appreciate ANY advice.

    My husband and I have researched FM/MPS so much, that we know what the researchers do (we met with one here in Nashville, he agreed we know as much as he does, ) I don't say that to 'boast', only to say that now I'm devasted that I seem to have ANOTHER issue with no real solutuon.

    I was in tears earlier, I just can't stand to think I will have to endure more pain. I'm very depressed right now. I'm angry at myself for going through the surgery, I had doubts and I didn't listen.

    I need to process this and try to find a bright side to this.

    Anyone with ANYTHING encouraging, I sure could use it right now. Thanks for listening, I fel really scared and alone right now.
  3. victoria

    victoria New Member

    This may sound simplistic, but it's what helped me:Candida diet and treatment, especially Pau D'Arco/Taheebo and Nystatin was better than Diflucan.

    I was dx'd with severe endometriosis in 1982, they surgically removed what they could (no lasers then)- and again in 1994 - hysterectomy was recommended then, but i declined, tho I did have laser surgery done then for what they could get to. But they can't reach all places; I have it even anally (sorry if that's too much info.

    I've been able to keep symptoms in check by following a strict candida diet - no sugar/refined carbs, yeast or mold foods. I always knew when I'd strayed because I would get the all too familiar pain back. I had to be very strict for over 25 years; now that I'm well past menopause, it seems I can get away with a bit of straying, tho I can still feel the effects if I'm not careful - yep, even tho I am well thru menopause! (Only upside was no hot flashes or mood swings, since we're estrogen dominant.)

    I don't know what the Endometriosis Assoc. says nowadays, but at least in the '90s, they'd done a survey as to what helped the symptoms the most. The majority said diet - ie, the Candida diet.

    For some reason, my gynecologist says my abdominal organs are still movable, despite my 'severe' dx. I don't know if the diet has made a difference as to that or not, as I was following it the whole time between 1982 & 1994 and still got the dx of 'severe'. My not so lovely insurance in the US excepted covering my whole reproductive system forever because of endo, even tho cancer is not associated (the last I heard, anyway).

    Progesterone is something that might help, is it possible to see someone who specializes in this? The Endometriosis Assoc. may be a place to start for help & referrals. Also have you read Dr. John Lee's book about the female hormonal system?

    Hope that helps, I feel your pain all too well.

    all the best,

    [This Message was Edited on 12/11/2009]
  4. painfreesoon

    painfreesoon New Member

    I am trying a gluten free diet, low sugar. I'm a vegetarian, mostly vegan, dairy and wheat bother me, so I'm hoping by getting a bit more strict with that again, that will help any other issues.

    Yes I have Dr. Lee's progesterone cream.

    I do not think those thing's will help with scar tissue. That's my biggest issue I think right now. With my MPS and the fact I've already had the surgery, the scar tissue has already formed.

    I guess, I have to haope that my myofascial therapist can reduce some of that.

  5. munch1958

    munch1958 Member

    It may not be adhesions causing the pain. Endo can and does grow in the scars. I know this because I was the former president of the Chicago Chapter of the Endo Association. I've talked to hundreds if not thousands of women with endo.

    I've got endo pain along my surgical scars especially the C-section/laparotomy vertical incision scar. My sister also has endo and she's got pain in her scars. We both have twinges where they went in along the belly button and around the other scars.

    I developed a hernia right in one of those little trocar puncture places which required another surgery. All they needed to do to fix this surgery was to put in 2 stitches. The odds are about 1:10,000 cases but they sure don't mention that is a possibility. It started out as a small hole or weakness in the abdominal wall but all sorts of stuff like the kitchen sink ended up in that hernia.

    Unfortunately, the endo can cause lots of pain when it implants along scar tissue. If it's very obnoxious mention it to your surgeon especially if you feel a lump. A hernia tends to lie flat and rise up at night. If you can only feel a lump when standing up or if any lump disappears in the morning when typically the doctor has office hours then suspect a hernia.

    Choosing a surgeon is critical. IMHO, the average Dr Joe-Gyno isn't equipped to be an endo surgeon. The very best ones specialize in laproscopy and are typically Reproductive Endocrinologists.

    If I were to ever have another endo surgery I would be flying or driving out of state to see a specialist. They tend to be very aggressive while Dr Joe-Gyno will just remove all of your organs hoping once your source of estrogen is dried up the endo will magically disappear so they leave the endo behind. Once a woman figures out that she can't live without some estrogen and goes on HRT those little implants that were never removed say HELLO.

    I also would NOT NOT NOT be on any type of ovarian supressive drugs like Lupron or Danazol before surgery. The doctor can't see what he can't feel and therefore can't remove. This is the biggest Catch-22 of endo surgery and the biggest reason why women are told "it's a recurrance". It's been my experience that once endo is cut out for good by a top notch surgeon it does not grow back.
  6. Chelz

    Chelz New Member

    I have FM and I also have a lot of myofascial pain, horrible hard noodle like knots in so many places. A few years back, I had a lipoma in my right hip/buttock area. It was pretty big and I had it removed, it was also painful. I was fearful of surgery, like you, because of my knotty body.

    After the lipoma was removed, it felt great in that area, but that only lasted for 1 year. I have horrible lumpy bumpy pain in the area of where the surgery was. My massage therapist says she can feel "stuff" in there all the time and she tried to knead it out, kind of like a milking motion to try and get the knots out.

    I have gone back to another surgeon complaining about this. He set me up with a cat scan to see if another lipoma came back, it didn't. Next, I had a MRI in the area to check for adhesions, but that came back okay as well.

    I definately believe that the surgery only made me worse and now I am in more chronic pain. I have tried physical therapy, didn't work, ice, heat, medicated rubs, nothing works and I am in chronic pain along with my FM and even have other knots too.

    I thought the same thing you did that I just screwed myself. I remember telling the general surgeon of my concerns, he looked at me like I was nuts, really ticked me off.

    Cat scans and MRI'S do not typically show myofascial pain syndrome because the knots are buried deep within the soft tissue and these tests will not show it. I basically have to live with the extra pain and it is depressing and exhausting, wish I could tell you what to do. I do believe that I have scar tissue and adhesions from the surgery and having tender muscle knots just adds insult to injury.

    My rheumatologist even gave me a type of cotisone shot and that didn't work either. So sorry, I do understand the pain. Hugs to you, Chelz.