Hi ladies can you please help me? Sorry this is so detailed but im desperate xx

Hi there, I am really hoping somebody can help me or offer some advice please I honestly do not know what to do and I m feeling desperate. I am 23 years old, I have 2 children with my partner who I have been with for 8 years. I am hoping somebody knows what I am going through or can understand as I feel I have had every test under the sun and the doctors cannot find anything wrong, my sex life is over.
Symptoms:
Painful urination - this can vary week by week sometimes day by day, from a mild sting at the end of urination to burning and hurting so much it makes me cry.
Painful sex: my vagina feels very sore, tender and sensitive which is why it hurts but I also occasionally get pain in my pelvis in certain sexual positions and have to stop.
Painful Vagina: again this varies, sometimes its just an unpleasant feeling in my vagina, other times its like sharp stabbing, throbbing pains. I often wear no underwear, and cannot sit for too long when this happens.
Excessive vaginal discharge: it is white or clear, and I have had it tested and results are normal, but I find it quite excessive.
I have had these symptoms on and off before, but since february this year they have been constant and getting worse.
Tests I have had:
I have had many painful pelvic examinations, the last time I saw a gynecologist he said although I was sore he could not see anything else wrong that visually everything was normal. He also performed a high vaginal swab and the results came back normal. I have had many urine tests, some have come back positive for infection and I have had antibiotics, but most come back negative. My last urine test was negative, I have been on many antibiotics over the years even when infection hasnt been present. I recently had a cystoscopy, again the urologist could see nothing wrong with my bladder. I have had a vaginal ultrasound, again normal, no cysts or anything. My gp had another look at my vagina last week, and said I am no suffering  vaginismus, but I think this is the result of having this pain for so long rather than the cause as I never used to have this problem, but all the other symptoms I've mentioned have been present.
Health problems: I unfortunately caught chlamydia at the age of 16 when I first met my partner, we were both treated but then I also got pelvic inflammatory disease, or was told thats what I had, and we were treated for that also.  I have had a few urine infections that have been treated with antibiotics. I had a "missed miscarriage" but then went on to have 2 healthy children. In the last 2 years I have had chronic pain in other areas and have been diagnosed with fibromyalgia, and a connetive tissue disorder. I also get skin rashes consistent with lupus although a skin biopsy and blood tests showed I do not have lupus.
So basically I have had so many tests and examinations and the  result is always, "normal" I have no idea what to do now, where to go, who to talk to all I know is it is putting a huge strain on my relationship, I feel like my sex life is over, and I am so depressed. Please, any advice more  than welcome. Thank you xx

Hi, I'm intrigued by your post because I also have a connective tissue disorder plus fibromyalgia. I have Hypermobility Syndrome (also known as Ehlers Danlos Syndrome Type III) and my problems relate to a very unstable pelvis. I didn't notice I had a very tight pelvic floor until I became symptomatic but some early indicators would have been pushing out urine instead of relaxing and letting it flow, outlet constipation where there's nothing wrong with the stool but the muscles don't relax and let it out, urinary urgency, UTIs from incomplete emptying and of course painful sex. I knew about my unstable pelvis and was trying to stabilise it for years before the V started and it was a physio who had me use excessive amounts of PF contraction during exercises that tipped my PF over the edge. Lots of my other muscles are also in spasm in an effort to stabilise various areas too. If you've been found to have tight PF muscles that's where you need to start because they will be keeping pain going by reducing blood flow to the area and the muscles squeezing nerves. Those of us with connective tissue disorders have way tighter muscles than those without simply because they are in spasm so badly to try and protect the joints so you may find your PF is horrendously tight. Just because you didn't know it was tight before doesn't mean it wasn't is my point. You also need your pelvic alignment checking as we're prone to subluxing and dislocating joints and then they get stuck in the wrong position so that's a must too. The internal pain can be pelvic floor or the hip rotators which get sore and hurt internally so a Women's Health Physio should definitely be your first direction. Even if something else set off the pain the tightness in those muscles will prevent it going away so please make an appointment with one and get them to check you out plus get them to take your resting tone so you know how bad you are. Feel free to PM me as we have that bonus connective tissue and fibro problem to deal with!

Thank you so much for your reply, we sound so similar as I forgot to add in my post that I, too, have been diagnosed with hypermobility syndrome by my rheumatologist but I wouldn't have dreamt until now that my hypermobility would have anything to do with it. Funny I was only sat in my garden today wishing to one day meet somebody with all the same problems that I have. I have amitryptiline on prescription but haven't taken many as they make me so tired I struggle to get up in the morning with my children, have you ever tried it? Has your pain improved now? I will definitely bring it up to my doctor next week about the womens health physio surprisingly I've never been referred before, its amazing how we learn more from eachother than doctors they are supposed to be the clever ones! It's just the urination thing it really does burn though have you had that without a uti? Sorry for all the questions! This particular issue bothers me even more than the fibro etc because fibro and the connective tissue disorder has taken many things away from my life that I once enjoyed, and now I feel like a new problem is taking away my sex life and inner happiness. Thank you xx

I had a feeling it would be good old HMS! There's a few ladies on the HMSA forum with V but they're very reluctant to discuss it in detail, even privately so until now I've been the only one on here with that as a complicating factor!   As we have a lack of ligament support "normal" people don't have our musles get alot tighter in an effort to compensate so don't be surprised if it is muscular. Normal healthy pelvic floors have a resting tone of below 2, my first Women's Health physio told me problems can occur at about 5 and she expected mine to be around 9-11 however mine was actually 20 which was the highest she'd seen in 30 years experience with PF muscles and while I was talking to her and felt relaxed it kept creeping up to 29. I would love to have some positive news but for me personally I'm going round in circles, if I relax the PF and keep it that way I totally destabilise my pelvis although my V improves. If I clench my PF my V pain goes through the roof and while my pelvis doesn't get any more unstable than usual it doesn't stabilise me properly so each problem needs the opposite and as I don't have ligament integrity to fall back on I can't do any PF relaxing or release unless I can stabilise my pelvis first. Utterly frustrating and I've been with my current (very good) physio for a year and a half chasing the end of the pelvic pain rainbow! So if yours is also muscular there should be some stabilising prior to release or it will cause more problems. Doctors know very little about the causes of V and often even less about the ramifications of HMS so it doesn't surprise me you haven't been referred. Every appointment I've had for either I've had to push for because they don't get how unstable we are since alot of emphasis for those "normal" folk I referred to earlier is on maintaining good mobility, it doesn't occur to them too much is also very, very bad and painful.


As for the Ami, I was prescribed that by my Rheumy for sleep problems and it made me woozy to begin with but it goes off, the vulvar dermatologist/specialist as she likes to call herself had me go up to 50mg a night but it didn't help any of my pain so she left it at 50mg which I still take for sleep and added Lyrica too and at 450mg of that on top I don't have constant burning in the external areas but I can still feel the sensation in the skin is wrong if that makes sense, plus tight clothing can easily provoke the burn back. It hasn't helped my sore vestibule one bit so I've still got that lovely symptom despite all the medication. I also eat co-codamol like sweets most days but still have severe constant pain everywhere but in particular my pelvis. I'd love to be one of these people who could just stretch and be done with it!!  

When it first started I felt like I had a knitting needle in my urethra and it was very sore to pee but it's the pelvic floor tugging around there that's to blame for that in me, I have found that symptom has improved though over time, unless I've clenched really badly and then it's back. The skin is still sore when urine passes it but not as bad as before and I find a bit of vaseline protects from urine so that's a possibility for you. If you don't live near a large hospital try phoning the nearest one and asking to speak to the WH Physio, I did that and asked about if she would treat me for both a tight pelvic floor plus a loose pelvis because usually they encounter a weak pelvic floor in that scenario and some deal with lax PFs and others tight ones. I had to go through a pointless appointment with a WH physio (although she was nice and got me to my current one) who only deals with lax PFs before I got referred on.

I hope you find some answers and please keep us updated as you go along, if you want to chat about our shared conditions PM me and I'll send my email address. And I totally agree, HMS steals your social life, knowing what painfree means, any lively activities, your career and in my case my partner of 13 years then plonk V on top of all that and you feel like you've completely lost who you thought you were. Soul destroying doesn't even begin to cover it so I know how you feel.