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

23 Replies

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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.

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 😀

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.

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 😊

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.

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

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

Hi Xindy

Any joy with getting your tablets?

Kind regards Carol 😊

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

Nitrofuratoin for UTi's. Only eat alkaline foods. No coffee or acid foods as feed bacteria seemingly. Try D-Mannose tabs get on internet and test kit. Lemon juice is supposed to help. Alcohol is bad too im afraid.

I’m so glad the aloe Vera works for you! I recommended it because it works.

I take that too and senna to keep things moving along as I get sore if I get constipated. I take Nitorfuratoin for UTI's and Ditropan to help stop having to pee so often in the night. Try D-Mannose to alkaline everything and only eat alkaline foods and no coffee (I do cheat ) and alcohol makes things with the bladder worse definitely for me. Oranges make things worse and theres a list of acid foods not to take. Lemon juice and honey is supposed to be good.

My bladder was not emptying properly either so drink lots through the day to expand it and nothing after 6pm was advised. Do pelvic floor exercises advised too by clinic.

I lost weight too helped on the Keto diet a stone a month. Got arthritis in hips bad.

I’m sorry there is no medical understanding and treatments.

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!

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

What cate dilated pelvis veins? I’ve never heard of that.

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

Doctors told me I had a prolapse turns out after visiting gyno no prolapse at all. Worried about having one for a year due to wrong diagnosis and theres also nothing wrong with m y pelvic floor. Most of my problems is down to recurring UTI's so take as advised by new doctor D-Mannose and eat only alkaline foods to avoid cystitis.

If UTI take Nitrofuratoin helps. Seemingly can have a standby prescription if I feel a UTi starting which I usually can. Very re-assuring.

Was going to the loo 6/8 times a night but got Ditropan and that helps me sleep and go twice now. Drink plenty water (no coffee) during the day and nothing after 6pm. helps.

Keep bowels clear also helps take senna or alovera.

Estogen cream is advised up here by medical profession twice a week. Helps I think but any cream applied down below helps sooth. Lidocaine cream helps but can nip.

Hope this helps.

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.

I had pudendal nerve decompression surgery and it worked. P.N.E. is severely debilitating. Have you considered that route?

I find AZO helps with urinary pain. Also I now drink every morning lemon juice and olive oil yes I know yuck but it seemingly helps break down bladder stones. I feel it helps as not sore now. Trying to lose weight again. Trying to drink more water and herbal teas. Had two severe 1 hour painful sessions when couldn't pee a week or so ago. Might be bladder stones it said on internet and advised above. Feeling a lot better and will continue with lemon juice etc add some honey to sweeten helps. Doctor had put me on a months Nitrofurantoin last month might have helped.

Think the months course of Nitrofurantoin helped for a while. Havent had to take AZO for some time. Going to try Flarin Ibrufen advertised lately on TV. AZO really works but turn your pee bright red/orange then yellow. dont take on an empty stomach as mde me sick. Rocking back and forth helps when trying to pee. Get bloated think will try gluten free again. Bowels never at peace. Keep taking lemon juice with honey everyday as once advised by doctor and read on internet. Hips get sore and back too sometimes. Pretty fed up with pain everyday. Try to walk the dog everyday.

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.