In 24/7 pelvic pain since 3 years - no diagnosis or treatment

[Foxgloves96]

Hi, I'm a 28 year old woman from Germany. I've had IBS since 16, never received any effective help (not for lack of trying on my part) so I've subsisted on an extremly limited diet for the past decade. I try to build on said diet and introduce new foods but it always eventually crashes and I get so much diarrhea, horrific cramping and weight loss that I'm forced to return to the same few foods I started with.On top of this I started having pelvic/urogenital issues at 25. It got really bad post a UTI however I think some milder forms of the following symptoms were present prior: I have a persistent dull pain in my lower left abdomen. It sometimes seems to move around or radiate throughout my pelvic area to the point its affected nearly any area and the pain has taking nearly every shape I can think of. After about half a year of persistent abdominal pain my labia started to be extremely sensitive, heated and irritated. I thought I had a yeast infection but gyns never found anything. I've had many STI tests all coming back clear. My lab results for any regular gyn tests are normal. Nothing on ultrasound. Nothing visible to the eye. But I am always in pain incl distinct pain in my clitoris and/or labia and/or vagina and/or pubic bone and/or thighs (can be dull or heavy but also pinching and sharp to the point I can't sit on most surfaces, the last half year it's turned worse and become stabbing or needling which I find distressing), urethral pain and urge incontinence, massively increased discharge that's yellowish and smells much stronger than it used to, pain during penetrative sex which was never an issue before (often felt like I had an internal wound or a specific internal area was irritated) - even with tons of lube I get sore fairly fast and my lower vaginal opening often tears and bleeds lightly. Consequently I have abstained from sex a lot for the past 3 years, however, my libido is surprisingly unfazed by it all and I am in a het relationship again now which means trying to navigate it carefully together. Thankfully I rarely have overt pain or issues while emptying my bladder or with bowl movements (if I stick to my diet).

I've had an estrogen creme prescription which resulted in such heavy clotty periods I was immediately taken off them. I did get a CET for fistulas but it came back normal. I have a special sitting cushion to relieve pressure on my pelvis that helps a bit and I'm often attached to a hot water bottle. I've not really had any other treatment. Just lots of doctors saying they don't know what's wrong with me. One said its all cause I don't move my body enough and sit at my desk all day (I do lack exercise though I try to go for 1-3h walks at least 3 times a week). I've been told it's cause I have anxiety which I always want to counter with how do you not have anxiety when you have constant periodically severe mystery pains in your genitals and urge incontinence?? I am in therapy to cope with the pain but I constantly feel like I'm a hairs breadth away from falling into depression. I do have an appointment with a pelvic floor specialist end of November so I'm a little hopeful about that but I know it may well be another dead end or even counter productive from what I've read on here. I have been told I should get tested for endometriosis and I probably will at some point but currently still terrified at the idea of my abdomen being surgically opened. I hate hate hate the lack of research into and care for female specific health conditions and the energy it takes to try and be one's own doctor. My pain plus IBS makes it such I barely travel anymore and work and study from home. Of course there's a social and career fallout from this if thankfully many people have been understanding and stuck by me. Still I have fear of being abandoned for being unreliable or unavailable as a family member, friend, partner, employee. I fear not being well enough to work full-time and support myself financially in the future. I fear that being sad, anxious and sexually dysfunctional will impact my romantic relationship (despite reassurance from my partner who I've only been with a few months). I'm incredibly grateful I don't want children because I'd probably be panicking about my fertility or ability to focus on a child's needs. I fear getting worse, becoming incontinent in my 20s, having something serious overlooked that will land me in hospital some day.

I appreciate any advice or encouragement, this being my first ever post here. I should clarify I'm a German citizen with public health insurance but financial support from my parents that makes it possible for me to access some aspects of private health care (like a therapist and physiotherapist).

[Better_1]

Hello,

I'm wondering if there is any pattern to the pain and do you take anything to help relieve it ?

You mention endometriosis and not wanting surgery. There are a couple of non invasive tests, at least one of them is available in Germany which may shed light on this. Have you taken the OCP to see if it makes any difference ?

What part of the country are you ? Has anyone suggested an MRI scan ?

[Foxgloves96 in reply to Better_1]

The pain does come in waves of differing intensity and expression through different body parts (ie the pain is more clitoral or more abdominal for a while). I do go 2-3 weeks sometimes where the pain is very dull and at its most bearable but it always comes back and then there's 3-7 days where its on a pain scale of 3-5 (out of 10, more than 3-5 when stabbing) which can exhaust me to the point of crying. But I don't see any reliable correlation eg in regards to stress or where I am in my cycle (which tends to be irregular and late but 1-4 weeks but that's not new and probably diet/IBS related). I don't take any medication and only very recently started taking 1 dose of Ibuprofen if I have an upcoming event or daytrip where I don't want to be mopey/weepy. I've never taken the OCP because of the many side effects which my friends reports. I'm very wary of hormonal intervention and even though I have a gyn whom I trust the German medical system too is so overburdened I can go months without an appointment. I had a terrible clotty period just recently likely from oestrogen creme and I couldn't get an in person appointment until mid January. I did have an MRI to exclude fistulas but not one to look for endometriosis. I can hunt down another appointment though it'll likely take months. To avoid potentially unnecessary surgery that's probably the best option to investigate endometriosis?

[edythe]

Hi Foxgloves,

This is a long time to be suffering without any real help.It’s not really clear to me if you live in Germany or are battling with the NHS in the Uk as a a German. I’m from the Uk and live in Germany.

If you have found a specialist pelvic pain physiotherapist, then you should find she will have good advice on who to turn to even if she cannot help you herself. Often physios know more than doctors and take theirpatients‘ pain and symptoms more seriously. I don’t know much about endometriosis but there are also some real experts around and Better obviously knows more than me and seems to be in Germany, too.

My question would also be where exactly are you? Maybe I could help further then.

[Foxgloves96 in reply to edythe]

Thank you for replying. I am a German citizen who is publicly ensured here but can access some private health care due to financial help from my family. I live between Kassel/Hannover in Northern Germany. I'm willing to travel to see a specialist should I end up exhausting options in my area.

[edythe in reply to Foxgloves96]

It’s my experience that a holistic approach is likely to be successful and that surgical procedures should be considered with caution. I hope for you that the physio you have an appointment with will be able to help in some way. This is the path I took, having done a lot of research myself and being lucky with recommendations and an understanding GP. Ten years ago there were only very few physios who did internal therapy, for example.

Maybe you’d like to look at the website of my physio: fit again Kathrin Franke (in Cologne). Here you can see what she offers - there’s even a paragraph on endometriosis. When I looked for physios in Kassel, the websites at any rate were not nearly as detailed. This was also true for physios in London.

Pizon has also given you some food for thought. It’s worth trying out yoga, qi gong or similar methods for relaxation.

Don’t give up!

[pizon]

hello…may I ask have you been to a pelvic pain specialist? From what you are describing it sounds to me like you may have pundel Neuralgia…please research this condition..personally I was misdiagnosed with many different conditions for over a year and a half many many dr.’s testing drugs ..it wasn’t until I researched and found a pelvic pain dr not a pain dr ..I found in order to get a proper diagnosis I had to go to a pelvic pain specialist..I had many of the same issues you are having and because the pundel nerve is a branch nerve it effects many different nerves around it that presents itself as IBS or Interstitial Cycistis ..I personally misdiagnosed with these conditions…I have found relive in yoga and meditation also herbal treatments and acupressure..please read the book “Healing Pelvic Pain” by Amy Stien..I hope this is helpful again I am no doctor I can only tell you the more I tried with the medical field the worse I got…. I hope this is helpful

[Foxgloves96 in reply to pizon]

Thank you. I've only heard of these nerve conditions through this forum. I will research the one you mentioned! And look at the book! I will be seeing a pelvic physiotherapist as I mentioned - might not be quite what you mean with pelvic pain specialist but maybe if she can't do much for me she knows where to refer me!

[pizon in reply to Foxgloves96]

Good morning…a pelvic pain specialist is a Dr that deals in only pelvic pain..I too did physiotherapist and it was helpful…but yes start with the book it sounds to me like you need a proper diagnosis I know personally I did not get a proper diagnosis until I did my research..I have found in todays medical environment you have to be your own advocate I have found this in both the US and the UK and with women I speak with in Ireland..I wish you much success and health..please keep in touch 💕