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Pelvic floor pain for 20 years, looking for someone to talk to

Posted , 5 users are following.

Madeira
Madeira

I've been dealing with chronic pelvic floor pain for 20 years. Actually 2/3 of my life was in pain: whether it was going to school (I had to walk for 45 min to it in a massive pain that I could barely move), or when I was in university, or when I was traveling, meeting my future husband.. pain was there no matter what. I think I had all the exams you can imagine done, but all of them would show that I'm great, in fact, I was perfect. When someone would ask me "where is the pain coming from" I would say "I don't know, somewhere inside". "Well, what causes it?" I'd say "I don't know". "Ok. What does make it worse?". I'd answer "I don't know". I honestly don't. Whenever I would answer these questions what I am feeling in such an abstract way in 3 countries in the emergency room, I would not be considered serious. In the Netherlands I was asked few times if I was really in pain if I can't describe it and in the United States I was told that I shouldn't even bother going to the urgent care if I have a chronic pain, there is nothing that can be done. After all these tests, numerous doctors and insane amount of disappointments I was told that I have a chronic pelvic pain. That means that my constant state of pelvic muscles is tense, meaning there is no way of having a sexual intercourse, at least for the moment. The other day I tried to put a tampon inside (for the second time in my life and I am 32 years old) and I couldn't take it out, the muscles just locked it in. I tried everything.. meds, PT, botox injections and few days ago I was told by a doctor that nothing can be done for me. Nothing. I am 32 and pain should be the part of my life. I'm struggling so much to accept it and I am wondering if there is anyone dealing with a similar issue and if there is anything that can be helpful. Actually, the only thing I am looking for is hope. Should I just give up for the pain? Is there still some hope that I could use to get better?

0 likes, 4 replies

4 Replies

  • norma72045
    norma72045 Madeira

    Posted

    Hi There,Now I don't know if we're the same but let's see.  For the last 13-14 yrs I've suffered chronic pain. Now I must say I'm a lot older than you,but pain is pain age don't make no difference.  Like you I've been into A&E a few times ,I've been from one end of the UK to the other,in search of some relief. Tests all clear,no end of medication,I've tried a nerve block,and oh the list goes on.  

    A few weeks ago I paid privately to see a woman's Physiotherapist,just hoping she could give me some answers. She told me my Pelvic floor muscles were extremely tight,and I had very bad bloating.  Now I've only been once up to now so I can't tell if she will help,but I do have a lot of confidence in her.  I've cancelled two more nerve blocks in hope of this working.  I do have a lot of other health problems,but none as debilitating as this dam pelvic pain.  My hubby and me haven't had a holiday in over ten years,it's just taken all of my quality of life away.  I get depressed because of the pain,I spend most of my days just looking on the internet at anything to do with pelvic pain,then I'm back to my GP,for more advice.its just completely taken over my life.

    i have ( I'm told) the best Gastroenterologist,and Pain specialist in the U.K.,yet there's still no change.

    i really feel for you,your so young to have this dam pain interrupt your life.

    If I were you ,if you've tried every avenue,talk to a good Physiotherapist,one that's recommended to you would be best.  At least it's another option.

    Take Care.🍀

  • bill20925
    bill20925 Madeira

    Posted

    Sorry a man is responding to this, but if it were me, I would definitely go see an IR, Interventional Radiologist. Most people do not understand this line of medical work, they think radiologists just read charts. IR’s are the Top Guns in hospitals that solve thorny problems and save lots of lives.

    Specifically,the IR profession has a non-invasive procedure for chronic pelvic pain that you very well might have. I just tried to look up the name of the condition and procedure but couldn’t find it fast enough in my emails, but the short story is, women often have enlarged uterine veins that cause tremendous pain. IR’s solve this pain issue without surgery, I believe by going through your veins to the problem area and cutting off or reducing blood flow to the specific area, something like that. IR’s also have a fibroid procedure which is similar. DO NOT expect your OBGYN talk about or give praise for IR’s because both medical professions compete for your dollars!!

    I do not know where you and others reading this note live, but there are advanced IR’s in the UK, Australia, NYC, Chicago (where I am, and I know several here), LA, etc.

    If you pursue this path and I am right, I would appreciate youj telling others, because not enough women are getting this advice and insight. Good luck!

    PS Just type in search “your major city (London, Chicago, etc), and “Interventional Radiology”. You will probably find several names and hospitals to reach out to. Do not ask your OBGYN, I doubt they will help.

  • bill20925
    bill20925 Madeira

    Posted

    One more thing, all women should view this. Type into search “Without a scalpal”, and look for the video documentary that aired in Los Angeles in March and is now on YouTube or as a video online. It will go through many types of female procedures, probably yours too.

    Good luck!

     

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