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Pelvic Pain Support Network
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Desperate...please help

26 years ago I had a total hysterectomy, aged 22 years, due to endometriosis and PID. Devastating at the time, but I then went on to adopt my beautiful daughter, so would go thru it all again to be her mum. 26 years later, in a job I love out of nowhere, aand I’ve been crippled by abdominal pain. 6 weeks ago I was rushed to hospital, they did a laparoscopy found a hernia, cyst and severe adhesions. After recovery at home and feeling better, but not completely, I returned to work. I love my job and have worked so hard to be where I am. I was back at work for a week, then the pain came back worse than before and landed me back in hospital. Once they ruled out appendicitis etc, they stuck me on a ward (orthopaedic as no beds on surgery ward) nil be mouth. After 30 hours of no food and just sips of water, I collapsed, in tears, vomiting abs exhausted having been told that the doctors were on their way. 20 mins later, doctors arrived and said I could eat as no need to operate!

I’ve been told there is nothing they can do other than pain relief (including tramadol and other strong painkillers).

I’m devastated, feel like I’ve lost my busy life of working abs doing all the things I do. Now I’m in constant pain and thinking I’ll have to give up work or reduce my hours. Just feel so desperate, scared and gutted. Had anyone had similar experiences? Is there any help I could try? Is this a disability? It feels like one. So can I get support and a blue badge as can’t walk far without severe pain? Probably not. I’ve just got to accept that this has taken my life away and there’s nothing I can do about it x

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So they haven't diagnosed the problem ? Sounds like you need an urgent referral to a different hospital where there is a Uro/Gynae Consultant and possibly Gastro as well.

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Hi thanks for your reply. They’ve said it’s severe adhesions from previous surgery and of pain relief doesn’t help then it pain management clinic. Had morphine IV in hospital but pain was still there. I’ve only been seen by surgical so perhaps should ask go for Gynae referral. Thanks x

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I suggest you see a Gynae or better yet a Uro/gynae. I am sorry I do not know more to help. Bless you in your quest for the answer. Don't give up hope for your future.

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Hi Denise sounds like you are in UK are you? Dont be fobbed off by one doctors answers They probably dont know what it is Go find a good gynaecologist or bowel specialist

Best wishes Holly

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Hi Holly, yes I’m in the UK. Thanks for replying. I think you’re right. I’ll speak to my gp to see about a second opinion as I can’t go on like this x

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What a shock for you to just one day...like me.....no longer be able to work and function. I feel for you but don’t give up.

Here in Canada, a woman is told to rest for three months post op after a laparoscopy. Did you go back to work too soon and cause the hernia from lifting something too heavy?

What did the doctors tell you caused that hernia? Did or do you have any metal hardware in your body?

I agree that you should ask to see other specialists. An endocrinologist might help along with a gastrointestinal specialist.

What blood tests did they do in the hospital? Do you have copies of the results? Did you ask to see them? Did they do a blood culture ? I ask because I just hope they aren’t missing an infection?

Do you have an appetite? I have used a product called Serapetidase for breaking down adhesions and scar tissue. It may work for you. It really helped me.

One last question? Can you describe the pain you feel to me AND what makes it worse? I care.

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Thanks for your reply Konagirl60. I was told by hospital to have 2 weeks off work and after that my GP gave me another sick note but only because I asked. They haven’t said anymore about the hernia as I thought that was what caused this recent pain. They just seem to rule out anything obvious , then don’t seem to bother.

I used to have my belly button pierced at the time of the first onset of pain, filling by laparoscopy but have removed this now. I don’t think they did blood cultures, not that I’m aware of and I don’t have any copies of results. The only element of bloods I’m aware of is that my ALT was increased. They retested and it has reduced to just above normal range. They’ve not given me any explanation re this.

I’ve not had a temperature and they said all my bloods were normal so we’re happy for me to go home with lots of medication.

I will look into serapetidase to see if that helps thank you. I’m also wondering if there are any alternative therapies I could try as don’t want to take all the medication they suggest.

It’s interesting that in Canada doctors say 3 months after laparoscopy but here it’s 2 weeks! Thanks again for your reply x

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Two weeks! I don’t think so. You’ve had surgery....minimum a month I’d say with rest and no lifting.

Good luck and keep me posted.

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Just had Hystreocopy yesterday, Dr gave me one month off work..

Today I felt ok and i guess I’m ready to work tomorrow... but I don’t know, maybe I should rest?

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For laparoscopy I think should be rest more thn 2 week sick note

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Too soon. Rest and relax.

Your body will tell you.

I’d give it a minimum of two weeks rest. Catch up on sleep and relax.....😌

Merry Christmas to.

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Hi Denise—here in the states we have therapists who do visceral manipulation to deal with the adhesions. You might try googling that technique to see if anyone near you does that type of body work.

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Excellent, thanks for that I’ll have a look x

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Did they say what kind of cyst? Is the pain in the abdomen or under the ribs? Did you have a complete hysterectomy, including ovaries? I agree with everyone who says get another opinion. A new sudden pain should come with a name (diagnosis).

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Hi no they just said it was small, on my kidney and they just left it alone (the cyst). The pain radiates on my right hand side. Sharp pains under my ribs sometimes and below my ribs a constant pain as if there is a ball of fire in there at times. Feels like it’s stuck and is worse if I’m active. Particularly hurts when I walk, breathe in and try to lie on my side. Yes I had complete hysterectomy so no ovaries. I take HRT. Been looking into visceral manipulation as per other post and thinking of acupuncture as don’t want to take pain relief forever x

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I hope you will feel better Denise... i pray for your health

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