Years of thinking all the discomfort was normal!!!!!

Hi All

I have been suffering with pain since the age of 15, in my stomach with severe bloating, my back, hips, legs and when going to the toilet. I had lots of tests and was told it was growing pains or part of growing up. I also became tired very easily and found it difficult to drink alcohol and party all night. I fell pregnant at a young age and they then said a lot of my pain and tiredness was down to the fact I was of slim build and I had 2 children by the time I was 20! They put me on the depo injection in 1997 and my periods stopped and in October 2009 it was suggested I stopped the depo and have a mirena coil fitted. This was one of the most painful things I have ever had done! And I can take pain! I haven't had a period since 1997 but I do get the monthly symptoms!

I'm now 37 and in October 2011 my doctor referred me to gynae after really complaining and telling her I couldn't cope with the pain anymore especially in my left side. In January 2012 after a very painful internal examination the consultant booked me in for a laparoscopy. In March 2012 I went in to hospital and after surgery I was told I had extensive stage 4 endometriosis and the only thing they could do for me was a hysterectomy. My hospital could not remove any of my endo due to the extent of it.

I went back to see the consultant in May 2012 and after along discussion he referred me to Manchester hospital (a 2 hour journey from my home town). So in August 2012 I went to see my consultant along with photos taken during my laparoscopy, he was excellent and I was booked in for an MRI scan, an ultra sound scan of my pelvis, sigmoidoscopy endoscopy and a health check.

During this time the pain had become worse, this was due to me having my first laparoscopy and everything being moved about. I also lost the feeling of when I needed to go for a wee this was due to the fact my bladder was being pushed, I would just go and sit on the loo just to see if i needed to go! I travelled backward and forward to Manchester and in February 2013 I went back to discuss the findings with my consultant. It was confirmed I had extensive endo with a large cyst on my left ovary, both ovaries were stuck to the womb my bowel was pushed back on itself and was stuck to my uterus causing pressure on my bowel and bladder. I was given a depo injection to shrink the endo and put on Tibolone a HRT tablet and booked in for surgery in June this year.

It was discussed with me there could be a chance of a temporary iostomy or colostomy bag if they had to cut away part of my bowel and they arranged for the stoma nurse to come and see me so I could ask all questions and put my mind at ease before surgery. I was told surgery would be approx 3 to 4 hours and during surgery they would also replace my mirena coil.

So on the 14th June at 2.20 p.m I had my operation and I am now recovering at home. Everything went well and I do not have a iostomy or colostomy bag. I have four insertions on my stomach, I am still swollen but healing nicely. I still can't walk as fast I would like and get a really bad stitch if I over do it. Going to the toilet isn't too comfortable but I was told this could be the case as my bowel has been in the wrong place for years. I have no idea how long it will take me to fully recover from surgery but I'm taking each day as it comes. I am going back to see my consultant in January 2014 to see if there has been any improvement, I can only but hope!!!!!

4 Replies

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  • Wow your post has really moved me. You really have been tru so much. I hope your recovery continues. I still get so upset when I read posts like this. I too have suffered since my teens. I remember being in hospital at 16 with bad infection. My Mom asked if I could see a gynae also as my periods were so painful. I was on my own when gynae came to see me. He didn't ask me anything or examine me. He told me I had an over anxious Mother. He said I was an only child and if he could " get rid" of one of his 5 kids he'd be delighted. I didn't say my mom and dad had lost 4 babies late in pregnancy. I guess I was too young. I wish could rewind time to that moment!! I also after years of pain was diagnosed with stage 4 endo May 2012.after numerous Dr's telling me to " toughen up" it's ONLY period pain.... If anyone tells me they have bad periods I really urge them to get checked out. If we were listened to in time perhaps the extent of the disease could have been avoided. I wish you and all the other ladies on here a pain free weekend. Take care and be good to yourself x

  • Your story is heart breaking but at the same time inspiring. You have five aka kingly well to get to this point on bravery alone, I hope this new chapter in your life will be happy, healthy and pain free.x

  • Thanks for the reply. I wish I had been more persistent with the docs when I was younger and I had asked more questions. Anyone who now tells me they have any symptoms I have suffered I tell them to go and ask the doc if it could be endo and ask them to be referred to gynae. It is disgusting how you were spoken to when you were younger and if you were listened to it might have a been a different story today. Wishing you a pain free weekend too, enjoy the warm weather, relax and take care.

  • It may be possible your mothers may also have Endo as it is a know to be a hereditary condition, I only found out my mother had Endo when I started to get treated and she admitted she lost 1 baby in late pregnancy and her then phalopian tube sealed itself to her Appendix and she had a major operation in the early 50's and she suffered severe pain throughout all her sexual life.

    I was lucky to ever be here as I came along 4 years later they never diagonsed her but she had all the same symptoms as me and she was induced with all three of her deliveries

    ( including the baby she lost) which is apparently also a hereditary part of the Endo

    so you guessed it I have both issues Endo and I was induced with both my deliveries

    ( boy I'm glad I had 2 sons ) I could not bear to think I had passed this nightmare on to any of my daughters.

    I have lived with this nightmare for 30 years and had several cauterisations and my next step is a hystrerectomy which by now I am looking forward to

    I would recommend if you have had the same Gyne for several years think about changing to one that is more sympathetic to Endo sometimes they just get fed up of seeing you and a new set of eyes as they say makes all the difference.

    It took me several years and 3 Gynes to find one who actually cared enough to get me tested and on my way to treatment and really explain what my issues where

    Once I had the support I still suffered but I knew I had somewhere to turn

    I had several years of pain free thanks to my last Gyne and although I do still suffer if it gets too bad he boks me in to take a look and does a bit more cautorising and off I go again

    for another few years

    My point being there is help out there you just need to find the right person to help you

    You wil never be cured but you can become half human again, just don't let them not treat you properly just to get you off the waiting list, put your foot down hard and keep asking for further investigation.

    Good luck to all my fellow sufferers and I hope one day they will spend money and time on finding a cure for this condition

    Most people have never heard about this condition and yet it affects so many women and their families lives as it can be so life debilatating. we need more support and advertising from the NHS and more support from Gynes to help us live with this condition

    Hope you all have a nice warm Painfree summer

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