Update: fibromyalgia - and it wasn't endometriosis

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I posted a while back about having investigations and hopefully treatment for endometriosis. I was referred for surgery, partly exploratory and partly to treat and remove the endometriosis and also to insert the coil. After the operation, I was told that I do not actually have endometriosis. I'd been told for about 2 years that I did and that this was what had caused the last 10 + years of gynae problems including contributing to the incontinence. Whilst it's really good I don't have endometriosis this did leave me with yet again, no clear answers. Since having the coil inserted, my periods have been much lighter which is great, however the pain really hasn't lessened much and the incontinence is just about as bad as it was. It's also still worse around what would have been my time of the month. My physical health is really not good at the moment with the fibromyalgia being much worse again and more pain from my back issues. I absolutely definitely see a link between my fibromyalgia and how bad that is and how bad my incontinence is. Although researching this topic there isn't terribly much that's conclusive on it.

So much else has been going on with my physical and mental health that more investigations into the gynae issues haven't been able to be the priority just now.

I feel really odd about it not being endometriosis. I felt really stupid for having the operation like everything must have been in my head. Though the surgeon did say to me it wasn't wrong to do it and it wasn't me that wanted the operation it was what the consultant had said was needed to be clear what was going on.

Does anyone else here have fibromyalgia and feel a link between that and their incontinence?

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  • Posted

    Hello Ginny31, the symptons you describe about incontinence

    are very much like mine and yes, i was diagnosed with fibromyalgia

    11 years ago. I have bladder problems as long as i suffer from

    fibromyalgia. Controlling my bladder got more difficult over the

    years and the pain of holding my pee got worse over the years.

    The urge is too strong and painful. I always linked my condition

    to fibromyalgia, but like you i found very little information on the

    internet that linked the two together.

    Since 2 years i’m under doctor's treatment of an urologist. I had

    many tests, tried different medicines and had physical therapy

    with no results. I’m not yet diagnosed with overactive bladder yet.

    Main difference between my condition and most other overactive

    bladder patients is that i don’t have to go to the toilet very often a

    day. I would say the normal 6 to 8 times. So i don’t feel the urge

    too often but when i do feel i have to pee, within seconds the urge

    is so strong i can’t bare the pain. This situation is very disturbing

    because i hardly can hide it from other people. Within this 1 or 2

    minutes i’m freezing, can’t talk and hardly breath. When i try to go

    to the bathroom before i get the urge i usually only urinate a little.

    Therefore my urologist suggested self catheterisation. The benefit

    of this was i lost less urine at a time when the urge occurred, so i

    could do with smaller pads, but the pain was still the same.

    Because of fibromyalgia i am used to handle pain, but this affects

    my life very much. My social life and my relationship has suffered

    by this because i avoid embarrassing situations.

    My hopes are now set on botox injection, but my doctor suggested more

    physical therapy first.

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    • Posted

      Thank you for sharing your experience eden98. Good to feel not alone... I wonder how many people with fibromyalgia do suffer with this but are too embarrassed to talk about it.

      Since my post I've met someone else who has fibromyalgia who also has urinary issues though not as badly as mine. She is involved with a support group and said she's heard other people report the problem.

      I've also been diagnosed with hypermobility which affects the connective tissue so can also lead to or worsen bladder issues as it affects the muscles around the bladder, and an autonomic nervous system disorder, so I think there's several things contributing.

      But the most marked link for me, as with you, is that the bladder issues are worse when the fibromyalgia pain is worse and also at the time of the month. It's a bad episode at the moment and I've had to go back to all in one / diaper type protection because I'm wetting myself completely with so little warning.

      I have to admit I get worse bowel urgency too when I'm more ill. Thankfully I haven't had a full bowel accident for some time but the urgency is uncomfortable and upsetting. Thankfully the urge tends to come early morning or late afternoon / evening when I'm at home. What I do find scary recently is that when I have the urge to go number two, before I get to the loo I often wet myself with no feeling whatsoever of the need to pee. The other night I was sitting down at home when I felt I urgently needed to go number two, and almost immediately peed a tiny bit which isn't unusual as I have leaks through the day. I got up to go to the bathroom and after a couple of steps suddenly felt very wet and then realised I was peeing and couldn't stop, then I felt the cramping I usually get first. Basically I soaked myself before I could even get to the bathroom and felt like I was seconds away from soiling as well.

      I had problems before I had fibromyalgia. I had several years as a child having bowel urgency that led to accidents, urinary leaks and urgency since my teens. But it's since the fibromyalgia that it's been worse.

      It's good you've been able to see a urologist. It sounds as if catheterisation is maybe helping you a bit but I'm sorry it doesn't reduce the pain.

      Botox was mentioned to me too some time ago as a possibility in the future. I'm not sure what I feel about that.

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    • Posted

      Hello Ginny31,

      It’s interesting to hear there are more fibromyalgia patients who suffer from incontinence. I searched several fibromyalgia forums but never found anything and did not dare to start a topic myself. I was too ashamed. It was due to your post i found the courage to write about my problem. I really think there are more fibromyalgia patients with the same issues.

      May i ask you what other fibromyalgia symptoms you have?

      I never have been tested for hypermobility but i think i might ask my doctor about it. The connection between FM, hypermobility and incontinence sounds very logical, and maybe my treatment can be adjusted to that. But then again it makes me very scared that like most FM related issues the only thing doctors can do is treating the symptoms, with no hope curing the disease. I am now 42 years old and it's hard enough thinking about a live living with the pain of fibromyalgia, let alone living with incontinence for the rest of my live. And then i didn't even mention the fact that unless doctors say FM is not a progressive disease the pain and lost of energy etc got worse over the years. Like you i also noticed a change in my bowel wellbeing for the last few month. In a normal situation when i feel the urge to go number 2 i have, 5 to 10 minutes, to go to the loo before the cramps get to strong. Luckily this is most often in the evening when i’m at home. However when for some reason i feel sick, the flu, or just a cold, the time i have to go to the loo increases dramatically. And twice an accident happened, luckily when i was at home. So when i feel sick i use protection, but never go far out of the house.

      Wetting yourself before feeling any urge seems very distressing. Although my urge comes almost immediately with pain and cramps, i’m glad to feel the will of my body. I can only imagine how it feels losing complete control of the bladder.

      First i was very enthusiastic about botox treatment, now i’m not so sure anymore. I wonder if my urge incontinence is only the result of an overactive bladder, in that case the chance of a good result with botox treatment seems good. Or maybe not only the bladder, but more tissue in that area is involved due to fibromyalgia that leads not only to an overactive bladder, but also to heavy bowel cramps, and sometimes uncontrollable bowel urge. In that case i think botox won’t do any good.

      Maybe if more fibromyalgia patients with bladder issues would step forward, doctors could do research if there is a link and when there is, to give better advice on how to cope with the problem.

      For me it’s also good to know i’m not alone. Sometimes the shame hurts more than the condition itself. It makes me feel less ashamed.

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    • Posted

      Hello. I'm sorry for the delay replying. I have not been well and have been in and out of hospital the past week, which I'll write about in another post. I was found to have a bowel obstruction. Thanks be to God it was caught in time before it became more serious and they were able to do what they had to to clear it, but I will have to be very careful for some time whilst making dietary changes and changes to my medications.

      I agree with you, if it is as we think, that bladder issues affect a lot of people with fibromyalgia, if more of us dare to step forward then more research could be done into it, to at least develop understanding of why it happens even if it couldn't be cured. I think having a reason for it can help and help us feel less horrible about it.

      You asked about my other fibromyalgia symptoms. I;d say the main ones are pain in trigger points particularly around lower back, hips, shoulders, knees and wrists; muscle pain; swelling in tendons; exhaustion; severe pain in back and legs on walking any distance or standing more than a few minutes (or at all on a bad day); poor concentration possibly as part of the exhaustion; weight gain (though also this is substantially due to the medications I take for my mental health, and somewhat my own fault through poor diet when I've been unwell, which I'm trying to change).

      I also have POTS which is an autonomic nervous system disorder affecting the heart and blood pressure and these symtpoms cross over with fibromyalgia, causing dizziness, fainting, weakness, shortness of breath and bowel and bladder problems.

      I am sorry that you also experience bowel issues. It would seem to make sense as you say that if the connective tissue is affected, it could affect the bowel cramps. I have certainly read that it affects the bowel function processing food (some people with severe hypermobility syndrome will have gastroparesis and have to be tube fed as their stomach can't process food int he normal way). So it would make sense that it would affect the cramps too. But I don't know a lot about that yet. After what happened to me this week I will certainly be finding out more about it.

      It definitely does help to know that you are not alone, I agree. I've found support in this forum. Also for me having the right protection so that I can be as confident as I can that my "accidents" will be contained and not cause embarrassment helps me, even if this means heavier protection, but I know this may not be the case for everyone, and that the need to wear protection can be very distressing too. Sometimes I do get very upset about it.

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