Persistent pelvic pain & next to no support. Does anyone know of any support groups or services, please?

[purpleheresy]

Hi - I was diagnosed with interstitial cystitis last April, and have experienced ongoing pelvic pain since I caught covid in September 2022. Next two paragraphs are just venting, request for resources is in the last paragraph if you want to skip it.

I have vaginal pain, bladder pain, and stabbing pain in my pelvis on my left side. I used to have urinary urgency & frequency, was originally diagnosed with a UTI, then referred to urology and diagnosis changed to IC. My mother and grandmother both had severe endometriosis.

I'm waiting to see a physiotherapist (privately) for pelvic floor physio. GPs/NPs have ranged from kind to cruel but generally don't seem to have any idea what's going on or what IC is. My urologist is dismissive - I've only seen him twice, and last apt ran 40 minutes late and it was lunchtime so I think he wanted to get it over with - the apt was very short and he was mainly focused on my inability to have penetrative sex because apparently my partner won't put up with that for too long (though he gave no suggestions for how to fix this, and I didn't bring it up), then took me off amitriptyline with no explanation of what withdrawal is going to be like or what to do if my pain gets much worse off of it (last dose on Tuesday - and when I had it at 25mg I felt my pain was better controlled, but it got reduced to 10mg then stopped because apparently it's a strong medication that's best not to be on when you're young). Next apt is in 6 months. I wanted to ask things like what treatments there are, whether in his experience I'll have this forever, what to do in flares, whether there's a possibility it might be a gynae issue instead/in addition to IC, etc, but it was very in and out.

Does anyone know of any resources, at all??? I feel so alone and hopeless and I am struggling to cope. A support group (over voice - like Zoom, or face to face) would be good to swap experiences with other people in the same boat. I would just really like to be around (virtually or not) people who get it for just a little bit. Chronic pain resources not centred around pelvic pain are fine. I e-mailed a couple of pain charities to ask about support and had no response, and I can't find any support groups or services on google. Any resources anyone has would be greatly appreciated.

[purpleheresy]

Forgot to add - thanks so much for reading if you have.

[Normie-Orms]

Hi there I too have undiagnosed pelvic pain after 3 years and um sick of it. I've tried everything the physio did adjust my hips which were tilted and the pubuc bone aligned but pain persists. Now I'm going to try EFT which is emotional release to see if I can get some relief the only thing that works is dope which I get here in aus as its legal medication in a vape. Nobody seems to know whstnir us and I've had all the scans available and nothing visible which leads them to think I'm mentally challenged I'm happy to facetime. Norma

[Bravesoulx]

Hello,I just wanted to let you know that you are not alone.

I read all of your post and I can identify with alot of what you are saying.

My pelvic pain and IC symptoms started 3 years ago, and at the time it all started I truly believed my life was over.

I was in a state of panic and felt so lonely, depressed and embarrassed. I looked down every avenue and had times when I wanted to see so many people and try so many things, I ended up self diagnosing as well as being diagnosed with different things too, from Pelvic Inflammatory Disease, to IC, to endometriosis, to over active bladder, pudendal neuralgia, damaged nerves, repeated BV and thrush infections, I even had polyps removed as I started bleeding inbetween periods and the doctor really scared me about what could be going on.

Fast forwards, 3 years and I have taken things into my own hands,

I have been off the amitriptyline for 2 years and I'm glad because it had alot of nasty side affects (I came off this myself), I have tried private pelvic physiotherapy she was lovely but not sure it helped very much.

Urologist and gynocologist next to useless as they just throw ideas around with no proper idea of what's going on or solution.

I use organic sanitary towels for when on my period, I use Dermol 500 for washing the outside of my private parts, I try to eat a whole food clean diet as much as possible.

When I have an IC type flare up with urgency, I deliberately space out the times of going to the toilet, and I distract my mind as much as possible with something else even whilst feeling the need to go. This has trained my bladder a bit more, and gives my a bit of control as I know I will definitely go for a wee once I get there. I have also noticed that stress can make it worse (stress is hard to control as a busy working single mum of 3), but when my brain is genuinely focused on a different project or life event etc nd I dont focus on it then I dont have as many flare ups.

This whole thing I still have no idea what it is, but want to reassure you that things do get better with time, and that you are not alone 😊

My post was alot longer than yours I think, so thank you if you read it too 🙈😂

I wish you lots of luck and positivity in finding a solution that works for you 😊 x

[MissStar]

There are other healing modalities out there - IC may be caused by repeat antibiotics - so there may be long term support needed to restore good health - have you considered herbalism or homeopathy? You may be interested in wholewoman.com for another approach to female health. I have been dealing with pelvic pain for 3 years, the nhs has failed me many times, I totally empathise with you. wishing you healing and the best of health!

[pizon]

hello I hope this helps…I was misdiagnosed with IC years ago I have been suffering with pelvic pain for 7 years now…I finally went to a Pelvic Pain Specialist…not a urologist not at gyn not a uro gynecologist I was diagnosed with pendual neuralgia it mimics all of the symptoms you are describing…the more I went to the dr.’s and the more procedures they tried and the different meds..I got worse…so I read the book “Healing Pelvic Pain” by Amy Stein I also do yoga the dvd by Dustine Moore “Your Pace Yoga..Reliving Pelvic Pain”… I also see an herbalist and take valerian root and hops…again this is what has worked for me ..I spent almost 2 years on the sofa I can now garden and drive I am living life again..there are things I can not do but am not suffering and enjoying life again…I had to accept that some legal of pain would be part of my life…but I am able to control it much better then the dr.’s could..again I hope this helps but start by reading the book it truly helped me

[Anna1101]

Hi

know exactly what you are going through right now.i was constantly in pain, couldn’t even sit on the chair, painful when i was going to the toilet, urge to wee all the time, i was waking up 8 times/ night just to do one drop. Some symptoms of yours relate to what i had, Vulvodynia. It took me 4 years to be diagnosed. I had pelvic pain, soreness when i was using the toilet, having intercourse was out of the question. I went to physio for 6 months, they teached me how to do certain types of breathing, i took Amitriptyline for the next 12 months, vaginal dilators and started to do exercises at home. Started with the smallest dilator for weeks . You do not change the size until you are pain free. There are certain movements that you have to do while using the dilator. I have started following this lady on instagram ‘the lady partspt ‘ - DR Heather Jeffcoat who wrote a book specifically for this topic and is describing how you should use the dilators. The main thing is to relax the pelvic muscles: anti inflammatory medication, Amitriptyline, pelvic exercises, dilators, use lubricants when using dilators along with good hygiene, speak with your partner/ husband and discuss this with him to be patient and gentle. To start again having intercourse you will need to get to the last size of the dilator and then try having sex.

I have read everything i could find about vulvodynia,this may happen due to various reasons. In my case was trying for a baby for years and sex became like an automatic process, had no pleasure which affected my pelvic muscles. I had to re- train the vagina muscles to work like before.

I hope this info will help you and hopefully i will hear good news from you. Just be patient, this takes months. You are not alone, i have followed and listen to lots of youtube videos to understand how to cure this horrible disease. instagram.com/theladypartsp...

[Agnessa]

Hi.

I’m having a pelvic pain for almost 3 years now. Most of my symptoms related to a sitting pain, rectal pain and some issues with bladder. I visited so many doctors, most of them had no idea what is going on with me, often feeling abandoned. I have done an MRI, which didn’t show anything abnormal. I was in so much pain, lost 12 pounds in 2 months, literally lost hope that my life will be normal again. Finally I was diagnosed with the pelvic floor dysfunction due to muscle spasm and after that I started looking for anything that could help me with this condition. Btw, I have a Hashimoto as well and all those troubles started when my TSH was unbalanced.

The life changed after I read the book by Dr Wise and Dr Anderson “A headache in the pelvis”. This book is a “bible” for patients who suffers from pelvic floor muscle dysfunction. You should read this book because you will find an exact story experienced by Dr Wise who found a method that helped him and other thousands of patients to become symptoms free.

I was taught his method called Wise-Anderson protocol and for the last 23 months I’m following this protocol at home every single day. I believe in his method now, because it gave me a hope that I can return to my normal life without drugs, surgeries, injections, the hope that I almost lost. I started feeling better in about 2-3 months of following the protocol. And now my life is almost normal again. I wasn’t able to sit for more than 15 minutes a year ago, I went to Europe on vacation and sit in the plane for 9 hours. My symptoms are improving. The sitting pain is still there but much much less intense. My rectal pain is gone. My bladder problems are almost gone.

Also, they recommended me a cushion pillow that I ordered from the theraseat.com site. It really helps with the sitting pain. I’m using in in the car or anywhere if I need to seat for more than an hour.

You can check the website pelvicpainhelp.com where you’ll find a tons of information. There is a combination of external and internal trigger points releases, some stretches and the most important the relaxation that you have to do daily.

It’s a stress related condition and find a way how to deal with the stress is a daily task. Everything that helps you to get relaxed, will help with these symptoms.

Hope you will feel better very soon! Good luck!

[RedTeddy]

You may find this support group helpful on Facebook, Embedded/Chronic UTI support group 😊