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New here...symptoms for many years..recent flare-up, LONG story

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  • New here...symptoms for many years..recent flare-up, LONG story

    Hi. While I've never been officially diagnosed with IC, I wouldn't rule it out. I certainly do have many other symptoms that seem to come with it though.

    I have been a slave to pelvic pain and problems since 1984 with really no help. I was only 25 at the time and now I'm 52. Though things have changed through the years and amazingly I'm still here, I basically feel that my life ended in 1984. I've merely been existing and trying to cope with the various symptoms ever since...not what I'd call 'living'.

    It started in August 1984 at the end of a workday where my job was very physical- doing laundry in a nursing home. I bent over to pick up a washcloth off of the floor when I heard a pop in the lower right quadrant, followed by what sounded like a very small rush of fluid. For a week or so, things just didn't feel right down there. Then I developed very sudden and severe pelvic floor spasms. I went from tending to be constipated to what I now would call several bouts of proctalgia fugax- pelvic floor spasms for several minutes and makes it literally feel like your pelvic organs are going to be expelled from your body any minute. At the time I described it to doctors as frequent, severe diarrhea. Maybe this is TMI- but I guess I would compare it to having the dry heaves- eventually anything in your colon and bladder is forced out. Everything that came out was very hot as though it had been heated in the microwave (sorry!). I'd have urinary urgency with little output. I also developed a very tight sensation in my whole abdomen and pelvis- like everything was glued together. I now know that this must be be due to adhesions but I never learned about them until many years later and no doctor ever mentioned them no matter how much I emphasized the tight feeling.

    I got an appointment at my local clinic a few days later. I spoke to the nurse first. When the doctor came, he didn't even come into the room. He just stood in the hallway with an amused look on his face and said 'You have IBS. Eat a bland diet with lots of fruits and vegetables. I'll have the nurse give you a copy of a bland diet.' And that was it- not even a brief manual examination! And he was the chief-of-staff!

    I then ended up going to another clinic- had endoscopy, colonoscopy, bariums- all negative. Had ultrasounds- nothing. One doctor said it sure sounded like endometriosis but I didn't have it. Don't know how he could have known because I'd never had an exploratory- from what I've heard, endo and the adhesions they cause don't show on any scan or x-ray.

    Finally 6 years later one doctor referred me to a University Clinic where I had an exploratory lap. I wish I could remember everything- can't seem to obtain the report. I remember that they looked very confused afterwards. It was as though they knew something had happened, but of course being 6 years later it probably wasn't obvious. Actually, a few years ago a fellow patient suggested it could have been a burst ovarian cyst which, in rare cases, can cause an immune reaction and result in adhesions, sometimes endometriosis and severe abdominal/pelvic pain. They did say I had fibroids, the uterus was enlarged and should come out. I did not want to have a hysterectomy- I didn't believe it would help my widespread symptoms and besides if I had a chance to get better I might actually want to start dating and have children since my life had been on hold the whole time since this started.

    Interestingly, a week or so after the exploratory lap I felt things loosen up and my symptoms all went away- I mean TOTALLY! I also went down three clothes sizes in less than a week- I knew I had been retaining a lot of fluid with all of this but doctors wouldn't believe me. I had been eating very little with all the GI symptoms but still felt like I had gotten larger. Unfortunately, the remission lasted only 2 weeks and then things started to tighten again and all of the pain, colon/bladder issues came back. I asked the doctors why I got better but then worse again and they said they had done nothing to cause improvement so they couldn't do anything to help. Knowing what I know now, I think they must have removed some adhesions while they searched but like many doctors, they didn't believe adhesions could cause such pain and problems. I can think of no other explanation. Any time I mentioned this brief reprieve to doctors, they said it was psychological- I only THOUGHT I felt better because I'd had surgery! What? I could merely think myself 3 clothes smaller in less than a week?! Honestly, I knew that an exploratory was merely that- just a look to see what could be happening.

    I ended up having a myomectomy somewhere else. It only made things tighter. And the fibroids only came back anyway.

    Finally, in 1998 I gave in to vaginal hysterectomy- kept ovaries. This was part of me resigning to the fact that I'd never get the chance to have a normal life with dating, kids, etc. I was 39. And I did have very heavy bleeding that never really stopped. And my sister and a couple of co-workers said having a hysterectomy was the best thing they had done. Though I should have realized that my problems were probably different from theirs- mine was more complicated. This was the only option I was given for the fibroids even though I had heard of other treatments. I was practically guaranteed that I'd feel better. Wrong!

    None of my pain, GI and bladder issues improved. And then I developed MORE symptoms. I was definitely passing gas through 2 different places- wasn't sure if it was bladder or vagina but now I think it is the bladder. When I wasn't actually passing gas, I could feel a sense of heat escaping somewhere down there, and I also started getting very strong vulvar burning and hot sensations in my abdomen. Everywhere I went, people said I smelled like very bad gas even though I wasn't passing anything from the rectum. No doctor I went to knew anything about any of these symptoms and thought I was nuts. They actually thought the idea of leaking gas through another outlet was funny and said it wasn't possible to leak air and nothing else. They also had nothing to say about the abdominal or vulvar burning. I also have more frequent UTIs and yeast infections which I don't remember having either of before the hysterectomy.

    I ended up seeing a psychiatrist who was useless. He didn't take anything I said at face value. He didn't believe I was actually having the leaking and odor issues nor the social and work problems I was having because of them. It was as though since I couldn't prove it then it was all in my mind. He diagnosed me as having body dysmorphic disorder- same thing Michael Jackson was said to have that caused him to have so much cosmetic surgery. I didn't know he'd given me this diagnosis until I saw my medical records later. He put me on various meds- one nearly made me pass out and I had to drive 40 miles to the clinic to get an anti-dote. I ended up on low-dose Paxil which still had side-effects, including weight gain which didn't help as I was still retaining water. Doctors tell me to lose weight but I know it isn't mostly fat as I barely eat anything most days. I took the Paxil for maybe a couple of years and then decided I'd had enough of the addtional drowsiness and weight gain.

    Since then, the abdominal/vulvar burning seemed to subside somewhat, and the leaking gas through the bladder lessened but remained. As well as the pelvic pain and spasms and GI issues though not as severe all of the time.

    Once I learned about adhesions, I tried getting help but doctors are loathe to do anything about them and claim they cause no pain or problems.

    I tried 2 physical therapists and a massage therapist who did visceral manipulation. They all said I had some pretty tough adhesions but were unable to do anything about them. I've done stretching exercises to no real avail.

    Earlier this year I decided to try a TENS unit. I loved the way it felt and thought maybe I could break the adhesions on my own. But I think I got carried away. I began to once again get burning sensations in my abdomen and severe vulvar burning and I am having the same odor issues as I did after the hysterectomy. I thought maybe I had brought on a case of diverticulitis which was causing the burning so just did 10 days on Flagyl and Cipro which wasn't fun- they are a pretty strong combination. I learned that women who have had hysterctomies are more likely to get colon-bladder fistulas than those who have not because the uterus separates the lower colon from the bladder. But the burning continues. Sometimes it feels like my urine has been heated in the microwave- not necessarily acidic but very hot! So there must be obvious inflammation in the lower abdomen-pelvic area. Sometimes I will be OK when I get out of bed and the burning comes out of nowhere while at work and last the rest of the day, while other times, like last night and today, I felt the lower abdominal burning all night and knew I'd also have the real bad vulvar burning all day. It even extends into other areas at times- the thighs, upper abdomen. It is SO hot and I don't think it is menopause- I believe that usually is more of a sweating issue by the neck and armpits which I don't seem to have though I have had a lot of chills lately. I haven't been spared the burning with odor for even one day at all the past month. I actually don't seem to smell it often but other people sure do and since this happens at work, in stores, and restaurants I don't believe someone is just pulling my leg- and it does seem that the complaints only come when the burning is there.

    I did see a doctor and mentioned the vulvar burning, possible fistula and a painful area between my left vagina/thigh or buttock that has been there since the hysterectomy. She wants me to do home-remedy stuff for the vulvar burning- all-cotton undies, no soap on vulvar area, baking soda baths,keep area dry, etc. and come back in 3-4 weeks. So far no improvement. I don't think her ideas are bad but I think the source of the issue is just as much internal as it is external since the burning occurs elsewhere and then there is the tightness from what is probably adhesions. She said my pelvic floor was strong- which it probably appears to be compared to most people since I've never had kids or even sex. She suggested kegels which seems weird if my pelvic floor seemed strong. I was told by PTs that I was tight and needed to loosen things up for more range of motion. I don't think I can change anything there anyway with all the adhesions- I did attempt kegels frequently for years with no change. And I heard they were bad if you had pain.

    She did say she would consider a CT to specifically look for the bowel-to-bladder fistula but will only treat one thing at a time which is frustrating. These symptoms have been really flaring for the past couple of months and I am missing so much work because I can't bear to be around so many people since I know when I have that burn I also smell. I want to walk around with my hand on my crotch! I've tried wearing pads in hopes of masking the odor but they don't stay tight enough to my body as I work and just about all of them have fragrance or other irritants anyway. And no doctor has ever been willing to provide me with any documentation to be absent from work as needed due to my issues yet people with migraines and back problems get this help all of the time.

    One piece of advice I'd give women who have bowel issues and are thinking that a hysterectomy may help- don't! I feel like, ever since my uterus was removed, what happens in the colon/lower abdomen also impacts my bladder, vagina and vulva- or at least more so. A case of diverticulitis is a good example- when a diverticula ruptures it can leak elsewhere and in some cases having a uterus there to provide some separation may be a good thing-especially to avoid a colon/bladder fistula which is hard to diagnose if you can even find a doctor who will try. Even though I had heavy, non-stop bleeding, I'd take mine back as opposed to having all of these obscure and difficult to explain and treat burning/odor issues. Insist on a different treatment if fibroids are the problem.
    Last edited by JETZY1; 04-09-2011, 10:37 AM.

  • #2
    Re: New here...symptoms for many years..recent flare-up, LONG story

    Hi I just searched using the word fistula and your post came up.

    How are your symptoms now?

    I had a vesico-vaginal fistula (bladder-vagina) and your symptoms definately sound like a recto-vaginal fistula (bowel to vagina) or similar. After my experience I found a forum and eventually became a moderator of that Facebook forum and learned a hell of a lot - most of the ladies in that forum were from developed countries who sustained a fistula during childbirth, or from Crohns disease, or from other surgery such as a hysterectomy. I created a website www.operationhopefistula.com to help women find assistance because the fistula charities would have you believe that this does not occur in developed countries - WRONG. In fact we had upwards of 5,000 women go through that group and we know of thousands more.

    Anyway I hope received some help. If you are still struggling I suggest you go see a colorectal surgeon.
    Chronic UTI's from age 16
    Endometriosis
    Ovarian Cysts
    1999 Childbirth 2nd child - Placenta Percreta
    1999 Childbirth 2nd child - Emergency hysterectomy
    1999 As a result of Hysterectomy during childbirth 2nd child - Obstetric Fistula - Vesico-Vaginal Fistula
    1999 Vesico-vaginal fistula repair using labial fat graft
    2004 Confirmed vaginal tissue left in bladder after fistula repair
    Bladder retraining
    Oophorectomy
    Chronic UTI's
    2015 Cystoscopy - tested for IC - results inconclusive
    Currently on: Vesicare, Vagifem pessaries, Premarin HRT

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    • #3
      Re: New here...symptoms for many years..recent flare-up, LONG story

      Thank you for responding to this old, old post --- JETZY hasn't logged on since her one post six years ago. I hope she's doing better by now.

      Donna
      Stay safe


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      • #4
        Re: New here...symptoms for many years..recent flare-up, LONG story

        I know. I thought it was worth a try though. Her symptoms were very familiar to me having moderated the Living with obstetric fistula Facebook page for 5 years.

        I hope she is doing ok.

        Gaby
        Chronic UTI's from age 16
        Endometriosis
        Ovarian Cysts
        1999 Childbirth 2nd child - Placenta Percreta
        1999 Childbirth 2nd child - Emergency hysterectomy
        1999 As a result of Hysterectomy during childbirth 2nd child - Obstetric Fistula - Vesico-Vaginal Fistula
        1999 Vesico-vaginal fistula repair using labial fat graft
        2004 Confirmed vaginal tissue left in bladder after fistula repair
        Bladder retraining
        Oophorectomy
        Chronic UTI's
        2015 Cystoscopy - tested for IC - results inconclusive
        Currently on: Vesicare, Vagifem pessaries, Premarin HRT

        Comment

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