Pelvic Pain Problems

[Kat791]

I have been suffering from pelvic pain for 10 months(vaginal, urethral, and anal pain). During that time, I have been struggling to get any help at all from the GP or anyone else. Because of the lack of care I have received, my pain has slowly spread over those 10 months to the point where I was referred to pain management. They say I have fibromyalgia and that there is nothing they can really do for me. As for the pelvic pain, pain management says I just have to wait for gynaecology, which I wasn't referred to until 4 months ago. (I don't know why I wasn't referred sooner. I can only assume the NHS didn't want to, as every test or referral I have gotten I have literally had to cry and beg for.). Gynaecology told me two months ago when I called them, that it will be at least a year before I even get an appointment.

Three weeks ago I had another GP appointment to talk about the pelvic pain. They did a vaginal swab(they did one back in January and it came back normal) at said appointment, and the results came back as "borderline". It said I had a heavy growth of strep b bacteria. I don't really know what any of it means, but it's obviously not normal. I was then told I needed to make an appointment with the GP to discuss the results. But the GP said to reception just to make a routine telephone appointment, so the soonest appointment they would give me is 5 weeks away, meanwhile my vagina could be infected. I am really not happy about it, but just don't know what to do, as it just feels like no one cares. Does anyone have any advice?

[Gigiruth]

Hi Kay791Sorry to hear you are having such a difficult time and feel unsupported.

I had this experience some years ago. It made me feel scared and life feel out of control. Strep B is naturally present in the body frequently for many people and the imbalance of can be affected by many things.

While it is important to check out and treat,there are many things we can do that supports the body to regain balance.

My body is good at expressing stress in a physical way rather than tears or anger. I find stress upsets my balance.

I have noticed in myself that feeling scared or things being out of control make things far worse.

I have found over the years I can reduce the very real pain by making changes both physically and emotional.

I examine all areas of my life and relationships and make healthy changes, reduce sugar,alcohol and processed foods. And address relationship balance as well.

This is not easy as I lie to myself that I make healthy choices when I could do better.

I have learned that I can have more control and that my body is much more sensitive than most. It has surprised me how controlling the emotions and sleep has made a big difference.

I use Deb Dana Polyvagal cards to help me focus on all areas.

I am more assertive about my own needs.

I hope you find a way of getting more control and balance back.

You are not alone.

Gigi

[Cat00]

I developed something called Interstitial Cystitis a few years ago, it causes all sorts of pelvic pain. I had a version that was really Bladder Pain Syndrome, but both conditions are comorbid with fibromyalgia. IC can cause vaginal, pelvic, urethral and anal pain. As always little is known about the pathology of these conditions.I was in so much pain for 4 years, going back to the gp over and over until I wrote a letter to them and I eventually got a referral. I could only sleep in 45 minutes bursts bc of the pain and was getting suicidal. Like you I had to wait supposedly a year but after 2 years and no appointment I went to PALS and eventually did get an appointment.

I found very little help in uk forums but a huge amount of info and help from an American forum called Team Inspire, they have a specific group for IC. I highly recommend it.

One of the pathways into Interstitial Cystitis is for people who get recurrent UTI's then develop IC but then there are people like me who have only had a couple UTI's in their life and still develop it. I suggest uou Google Interstitial Cystitis too and see if any of it chimes with your experience.

[Kat791 in reply to Cat00]

Thank you for your advice. I have looked a bit into IC, but I don't think that's my problem. Mainly, because I don't have to pee all the time, and sometimes the pain is actually less bad when my bladder is full, and then gets worse after I empty it(which is weird, and I can't explain). I also have not had problems with UTIs in the past(I have never actually been diagnosed with one, so idk if I've ever had one).

[Cat00 in reply to Kat791]

IC is really just a catch all fior about 30 syndromes, so some versions don't have anything to do with the bladder as such and can include things like pelvic dysfunction. I've only had cystitis once in my life so I don't fall into that category. Really it's just a term that can refer ongoing, unexplained pain in that part of the body. If you look on team inspire you'll find many people who describe symptoms like yours. It's useful because they detail the many different treatments they've tried or have heard of which can help you advocate for yourself when you're at the doctors.

[Loobielu]

Hi Kat, that sounds like you're having a very scary and awful time, I'm so sorry to hear that. Honestly if men had vaginas the care of them would be taken more seriously😤! It appears that strep B is only taken as serious if you are old or pregnant. This may be why you're not getting prioritised 🙄. About 4 years ago I had multiple tests and investigations for pelvic pain and then a cystoscopy picked up inflammation on my bladder and also diagnosed IC like Cat00. Mine feels like a UTI but there is no infection - it's mighty unpleasant. Unfortunately I have no personal experience on strep B but urge you to keep pushing the medical professionals hard for action and I always advocate to my daughters (also in their 20's), if you can squeeze the tears out to get help, absolutely blooming do it!! All the best, I hope you get some help and relief soon 🙏🤗 x

[Yassytina FMA UK Volunteer]

Hello Kat, I do feel for you and waiting 5 weeks is not good enough(hard I know getting past receptionists but I would go in too front desk and say I’m not leaving until I get a much sooner appointment,) take a close member of female family with you for back up, i have done this , surely with the results they should be helping you 🙁I’ve asked for nurse practioner if doctors are busy as they can help with most things.has a GP diagnosed your Fibromaylia ?as if so you would like too know for sure and your medical record updated, glad too see our members have replied with some helpful advice , sending my best wishes , let us know how you get on xx

[Kat791 in reply to Yassytina]

I was "diagnosed" with fibromyalgia about two years ago by a rheumatologist who I saw for about 5 minutes. At the time I was experiencing some pain in my wrists, thumbs, elbows, and back, but I was not experiencing pelvic pain or pain all over my body like I am now. I think it's possible that I have fibromyalgia now, but if I do I think it was caused in the last year by the lack of care I have received regarding my pelvic pain.