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Pelvic Pain Support Network
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Looking for a case study who has pelvic inflammatory disease

I’d like to talk to a case study who has pelvic inflammatory disease – what their symptoms were, how they’re doing now, what advice they’d give to others. Is there enough support out there?

It is for an article on the health website Patient.co.uk

Do let me know if you would be willing to help

Thanks so much

Karen

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Hi Karen, I would be happy for you to talk to me, I have had a lot of pelvic inflammatory disease, starteting with hysterectomy and then ovaries and then gall bladder and then Ic and had to have cystoplasty and fifteen years on have adhesions surround the bowel and giving me sub acute bowel obstruction. And No there is no help out there when you you are so desperate for it. Doctors are very easy to get you out of the surgery within ten minutes with a " take paracetamol" I struggle to get comfortable and found by mistake that Tramadol eases the pain but makes constipation worse so viscious circle.

let me know if I can help, we need to have more awareness and maybe more research so women can lead a reasonable pain free existence. If I was not a coward I would have happily ended my life. The pain is unbearable and no one listens.

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I am a long time sufferer of pelvic pain with very bad constipation every thing that is supposed good to eat mad it worse. Some lovely lady on this site gave me a tip, she told me to take aloe vera. Well l can't quite believe it l brought in the heath shop aloe Vera colon cleanser. I take one tiny table at night by the morning l have been to 💩it's amazing!! Hope it helps you let me know how u get on? Carol 😀

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Hi, Thanks for this. I did try aloe vera but will try again maybe using the Aloe vera juice was too much maybe I will try the Aloe vera tabs. So much has happened in the last 8 months. I finally made a decision to go private and see my Colorectal surgeon who suggested CT scan, which showed adhesions causing the bowel problems but I was not convinced so did not opt for surgery, then I was referred to a gynae and that helped a lot, but also I was referred back to Uro and this has been a lifesaving trip. The Uro found that bladder was not emptying and I also had urine infection so after six courses of antibiotics I am beginning to see light at the end of the tunnel.

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Thanks so much for your reply. So pleased that you are getting some relief. You sound that you have suffered like me. I am so much better taken my aloe vera miracle tablet at night.

Some of my nightmare is..... I had one ovary removed 2002 due to fibroids then in 2004 hysterectomy due to chronic pelvic pain! Still suffering, so in 2015 l had my Addison separated the gyn said he had never seen so many it was like a glue pot inside!l he also said that l had some very close to my bowel. But that would mean surgery. After a lot of year's suffering I asked to see a bowel specialist.He told me that Addison don't give pain !!!! 😫 So l am waiting for a colonoscopy which l am so not looking forward too! As l am back at Square one all those years ago! I am under pain clinic had a steroid injections two months ago. Helping a little but don't think l will every be free of pain. You just have to get your head round it! Kind regards Carol 😊

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You sound just like I was and I was getting constant burning sensation, and now I am using catheters but that is giving me a constant UTi. I do hope a colonscopy will get to the right diagnose for you as the hardest part is getting the consultant to believe how much pain you are in and how it affects everything from breathing to lifting. I am going to try the Aloe Vera Miracle tablet, I went to a health food store and the tablet they suggested the Aloe Vera juice. Please let me know where I can get the tablet form please. Thank you for sharing as this will help a lot.

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I brought my tablets from the Holland and Barrett health food shop it's.... colon cleansing it's in a little green tub it was on the same selves! as the Aloe Vera Juice! Do u live in the UK ! Xindy? I can post some to you if u can't get them? xx

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Hi, Thank you so much for the kind offer, yes I do live in UK but now I know which ones you mean I will try H&B tomorrow. Will let you know how I get on with them. Thank you again

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Hi Xindy

Any joy with getting your tablets?

Kind regards Carol 😊

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Yes than you, I started taking them immediately, just waiting to see how long it will take for results at the moment I have not noticed any difference but going to persevere. it has not helped with having another UTi everything feels inflamed and sore

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Hi there, not sure if you have now completed your research, but if I can add to the conversation at all, I would be happy to.

I had it the year before last following complications post IUD procedure. Not fun; had no idea where to go with the post hospital pain/issues; didn't want to fuss!

N

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Hi I have been diagnosed with dilated pelvic veins. Is this the same?

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Hi Karen, I have just been diagnosed with pelvic organ prolapse. I am 71 and doctor was unhelpful saying I should just live with it. It is extremely uncomfortable, but now I would say it is painful. I have paid to see a physio and she seems ok. Talked me through the probable reasons for it. Seems quite right about it too. She has given me exercises and advice about how I go to the loo. This has improved. But it seems hard to keep up exercises when it feels like there is nothing happening and no improvement. I pressed my doctor for physio, but there was an 8 week delay. Said I must try this first. Would be interested if you can give me any advice. Thanks

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I have had pelvic floor issues for 13 years. It was only about 8 years ago that I first read a very small article in the entire internet about Pudendal Neuralgia. I copied and took that to the neurologist whom I was treating with at the time. He read it and asked me where I got it! He kept the article, but didn't change any treatment. He treated with high powered medication only which continued to change, but did nothing for me. I changed doctor's several times with several injections here and there, which did NO good. I had an SI joint fusion and also had my coccyx removed in an attempt to relieve the pain! Nothing helped! Hey, I was only searching for relief and believed each attempt would be the hit! I continued to change pain specialist as each had a new treatment. I have tried three spinal cord stimulators. (neurostimulators) Nothing has ever worked....until my GYN referred me to a diagnostic radiologist who was employed by the Orthopedic Spine Institute. I had the injection. He used a fluoroscope guided steroid procedure. I had relief for a while and when I asked for another he refused and said I needed a CT guided injection, and since he didn't have access to one and didn't have hospital privileges, he refused. So far I have been unable to have a CT guided by someone who knows how to do it.

Medical Marijuana is legal in my state and I finally saw a doctor and started that route. Since I hurt when sitting or lying down, I could not sleep much at night. I cannot take much THC during the day as I get a sluggish and uncomfortable feeling, but the medication I use at night must help with the pain, inflammation, and makes me drowsy. This works for sleeping! I am still searching for something to ease this very debilitating condition.

I will tell you for certain, opiods do not work for neuropathic pain!

I will help if there is any additional information you may want.

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There are several support groups which I find are very helpful. People freely answer and ask questions. There are not physicians properly trained to deal with pelvic floor issues in the US.

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