Fybro and endo at 23, help?

So after 6 years I have finally been diagnosed with a mixture of endo in the bowle and and fybromyalgie. I now feel left in the dark. My symptoms have already left me bed bound most weeks,on morphine and having to wear incontinence pants. Is there anyone our there who can tell me what to exspect? Or anyone who has both the conditions? I feel like I'm at the end of my rope without a ray of light in sight. Help

14 Replies

  • Hi Emmahuh oh bless you, I wish I could help but only ever knew of 1 person that had endo and i didn't know you could even have it in bowel, I thought it was a womb thing. That must be awful, I do know it's excruciatingly painful and to have Fibro aswel with all your nerves making the pain worse. I think whatever you have wrong with you, if you have Fibro, it always makes it worse.

    If your on morphine, pain relief doesn't get much better but you do have Fibro flares, when it's worse than other times, so it could be that you are hAving a flare. It must all be very stressful for you & scrambles your brain a bit and the worse thing for Fibro is stress.

    So you needed to try to do calming things, if you can, have bath. Light some scented candles, put some calming music on. It will hopefully pass for you quickly.

    I have Fibro with arthritis also nerve damage & if I get a flare up with the arthritis, it sets the Fibro off & i don't know which is worse so I do feel for you & hope it soon passes

    Peace, luv n light

    Jan x

  • Thank you. I will try and keep calm as much as I can. Its just hard at the moment.

  • Hi Emmanhuh, I also have endo and fibro with many other conditions. My mobility varies from day to day but most days I need extra support. Endo and fibro are different for each individual. Have you had any operations to remove endo yet? I had my last operation Few years ago but feel my endo has come back. I have IBS and irritable bladder also so my stomach is constantly in pain. If you ever have question I am here! X.

  • Yer Ive had three laps to remove it but it keeps coming back and the adhesions are getting worse each time they do it so they won't operate on me anymore. The mixture of the ibs that comes with fybro is more painful than I can write into words. At the moment I'm having a flair up with both i think as my knee has completely seized up. How quickly did it progress with you?

  • I was diagnosed with endo 1st and then my doctor noticed more and more symptoms of fibro. Within a year from knowing about endo, I was told I had fibro. My IBS is one of worst symptoms, it's very painful and have ended up in a&e with stomach pains many times. For me my symptoms become rapid but everybody is different.

    I am sorry to hear they won't operate again. It's a difficult one they offer me a hysterectomy or injection to start a menopause but I have refused both. I am only 28. So I totally understand how difficult it must be at your age, I was diagnosed at 25. I am on pill which stops my periods, which is bliss! What treatments have they offered you for endo?

    I do hope your flare is a short one, I'm have been having a flare for a few days now and my sleep is all over the place!

    Here if you need me!

  • Hi Emmahuh

    I am so gneuinely sorry to read that you are suffering and struggling and I sincerely hope that you can find the answers that you so desperately desire and deserve. I have not got anything like an endo in the bowel, and like Janet28 I was unaware that you could have this there, and I am so gneuineyl sorry that you do.

    I have many other medical conditions along with my Fibro, and it is impossible to say accurately what will or even could happen in the future. The problem with second guessing is that it can take you anywhere, and usually not to a good place?

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Thank you :)

  • :)

  • Have you looked into chronic fatigue?

  • No I haven't. Why do you ask?

  • Hmmm, difficult to put into words- but I have CFS, lupus, fibro, aps, thyroid issues, and a few other issues, Iv been diagnosed with IBS and diverticulitis at various times, and at 64 Iv not spent a lot of time in bed during the day. You are only 20, just seems to me there's more going on than those diagnoses you've been given. A lot of my stomach troubles stopped when I had the treatment for lupus, hydroxychloraquine. I only got some of my diagnoses in the last 5 years.

    Would hate to see your life blighted by this, being so young, when there's good treatment available for whatever else it is you have.

    Can I just add that I go to a Fibro and me/cfs club once a month. Similar symptoms but those with ME are in bed a lot.

  • I've had a colonoscopy and they found no signs of crones. I bleed from the bowle and they tried to tell me it was just ibs at first!! (some of the dr's I've seen have been rubbish.) I also have thyroid issues (underactive) which way are you if you dont mind me asking? A mixture of pain and fatigue keeps me completely bed bound two weeks out of a month as it always revolves around my cycle. I always thought that the pain is what has given me the fatigue as when i have a bad pain day i tend to be exhuated by the end of the day. I also take oramorph, tramadol and amitriptyline which are all heavy sedatives. I wish there was a group for fbm/endo where I am but no such luck. Thank you for replying, it's nice to know I'm not alone in this.

  • I am wondering if you are under the care of a Gastro-Intestinal Surgeon? I have just retired from theatre surgery in gynae and we often had the Gastro surgeon work along side the gynae surgeon to eradicate as much endomet as poss and make life less painful. Have you been or been put forward to either?

    best Wishes from Nurse Gladys Emanuel (open all hours)

  • Thank you for replying. I was under gynea but then got moved to gastro when the lap didn't work. At the moment we are considering talking to a medical solicitor as I have revived serious nerve damage from the op. Also I poop blood now and that only started after my first op. I have had it removed twice but it just keeps growing back.

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