Long and winding road

ok, this is going to be long and I've put off posting before as my history is complicated. I was diagnosed with FAP a rare genetic bowel condition at 8 where I had thousands of polyps in my bowel. I ad my large intestine removed then and a full permenant ileostomy n 2000. Everything was good for a while then I started having bowel blockages and severe monthly pain which spread to the whole month. I went to the doctor who kept trying to refer me to the bowel surgeon despite my protests that I thought it was gynae. Their argument was it would be quicker to see a bowel surgeon. In desperation imwent privately to see a gynae surgeon who diagnosed me immediately with hydrosalphinx in my Fallopian tubes. I had keyhole to deflate these, and he explained that I had a frozen pelvis. Everything was encased in scar tissue. My ovaries are stuck behind my uterus and bowel to my uterus. I got no relief and a further keyhole was done and the Fallopian tubes removed as they had reinflated and everything else had adhered again. He couldn't even see my ovaries and warned me that only a brave man would ever go in there agian. By now it is 2008. To help with pain I had a course of Zoladex which worked amazingly and alongside top up hrt i had no side effects. I relocated to London in 2009 just as I stopped the Zoladex. Sure enough by 2010 pain was returning with bleeding throughout my cycle. Again it took a long time to get referred to a gynae surgeon in a hospital where they regularly 'forgot' about me till the clinic was over, made appointments for the wrong clinics and told me my problems weren't gynae (easier to send me to my bowel surgeon). Bowel surgeons reply on repeat ' if it's not waves of pain it's not bowel' I was left between two departments who would not take responsibility. I gave up for a while then got referred to a community gynae as I refused to go back to the previous hospital. I had the mirena which helped bleeding and not the pain, gabopentin (no effect), more blockages and then got referred to St Marys. The surgeon put me on Zoladex to see if it improved symptoms and said the wasn't keen to do surgery. I got given gonapeptyl depo with livial from June. By July/august the endo pain was gone and replaced with horrendous joint and muscle pain, headaches and extreme fatigue. I felt at my wits end. How could I work every day like this? I could see my GP was looking bored of me! I had an MRI at the end of June and eventually had my review in October but they hadn't bothered looking at it at the review board. My surgeon wouldn't see me but another doctor did who told me I was too complicated a case for her so ran between me and my surgeon in another room to have consultations. She told me to come stop the gnrh injections and have an implanon implant to reverse effects and address side effects. I was referred to contraceptive clinic by GP form this all the time wondering why I would have an implant for three years to address an injection that would wear off in a few weeks. The doctor at the clinic was shocked to be honest that it would be suggested when I have the mirena coil. She listened to me for a change. She said she would contact my gynae surgeon and suggest a hormone profile. She treated my thrush that the previous gynae and GP ignored and gave me oestrogen cream for my dry itchy skin. I'm seeing her again on Friday. Will I finally see someone that cares?

4 Replies

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  • You've certainly been through the mill. I can't offer much advise except I know how you feel I've got a permanent ileo after my tummy pain became unbearable of Feb this year the gp was sure it was to do with my bowels.

    I've suffered for so long I was admitted to hospital last year and for around 2 years the pain has been put down to kidney problems I've had all kinds of scans on kidneys but nothing hasshown up.I wonder what. My gynae diagnosed endo finally in June and I also have ovarian cysts.

    I'm at my new gp today and hope she refers me to a gynae who understands not one who fobs me off.

    Good luck on Friday xx

  • Thanks for the reply, I can't wait to see if my joint problems are helped by oestrogen patches which the doctor is suggesting. At the minute I literally fall asleep each time I sit down. I'm on halfnterm at least.

  • Hi,

    I am sorry to read your story .

    I know what you are going through I have met many arrogant consultants too who would not listen or do anything .

    I have tried hormonal injections but they did not work for many reasons and the side effects were so bad I don't think I could have hormonal treatment again .

    mirena can cause tiredness infections and headache.mirena has been pushed and pushed by gynae as a possible help for endo but then if it does not work , who cares then?

    I am not sure what to tell you just I understand what you are going through ... I even discharged myself from one hospital as it was a total waste of my time .

    Have you noticed if any food makes you worse ?

    I have 5 surgeries but three were a waste of time as one nothing was done two I had an infection and they spread it as they did not check the blood , three my bowels wer too big so too risky !!

    I too have waited hours in hospital most times for nothing once I waited thre hours just to be told there was nothing else they could do for me and they discharge me ..

    Don't get down.

    Take care

  • Thanks for your reply Maeline, as for food I have to stick to a low residue diet as any fibre results in blockages and a hospital stay. Unfortunately I've piled on the weight since I follow this diet but it's the only way to prevent blockages due to adhesions and scar tissue around my bowel. I know in my MRI it shows I have endometriosis in my uterus and sheets of tissue and fluid elsewhere but I don't know if I trust the doctors to do surgery as I see a different one each time and they just seem to prescribe one treatment on top of another without taking the time to really look at the individual case. Just wondering where I go from here.

    Thanks foe your support, knowing everyone umderstands is a big help

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