Chronic pelvic pain

[M3t4l]

29yo female in England uk.

Had chronic pelvic pain for 3ish years. See nhs physio with dilators and diaphragmatic breathing exercises alongside psychology for mindfulness exercises. Not enough money for private currently. Am self employed.

Meds

On 100mg amitriptyline at night as well as prucalopride and laxido for chronic constipation

Also fostair for asthma and montelukast for asthma.

Last 3 weeks I've had horrible pain on my vulva and in my vagina. It's hurting to lie down and sit down constantly and I cannot get comfortable if not standing.driving is horrible.

I can tell my pelvic floor muscles are stiff/pulled up when I try to do my exercises.

Had tests at Gp for a few things all clear/negative. Not had sex for a few years as was too painful so is not that.

No clue what has suddenly made this happen and whether it's related to chronic pelvic pain or not.

All seems to look fine.

Have tried physios suggestions but none helping at all and told me will chat about it in next appointment 6th June.

Going to try donut cushion & have got a few suggestions off past posts on here as to medicines to ask about when I next see her. For now I'm struggling to sleep and feeling pretty rubbish about it all as I can see is pretty common.

Any other ideas would be super welcome.

I've read some nightmare stories on here and hoping all I've read are doing much better, it's so scary!

[Graham49]

I assume you have had blood tests to check for an infection. Suggest you try and get an MRI scan, although this can be difficult get if GP thinks its muscular.I have found NHS physios to be ineffective for my problems.

You might want try some treatments that you have to pay for (but fairly cheap) such as Alexander technique, accupuncture, Rosen massage. These will help to de-stress your body.

[Jobie18]

HiJust wondering do you get shooting nerve pain up your privates? If so you might have Pudendal Neuralgia and if so your doc etc is highly unlikely to even know about it.

That's what I have and cannot sit at all, even lying down if not completely flat is an issue. Also tight pelvic floor muscles. I know its not the be all and end all but have you got a good diet?. Two years ago I had the worst nerve pain all over my body, trued everything and the only thing that made a difference was I went on a keto/low carb diet, its really helped take all the excess nerve pain right down. Hasn't helped with the pudendal nueralgia but its worth a research if its not something you've heard of before x x

[QueenVic1952 in reply to Jobie18]

My bestie has had botox in her nerve. It helped!

[Jobie18]

Oh also I had terrible asthma growing up and cutting out cheese and dairy was a great help. Dairy makes your sinuses and chest all flemmy creating mucus. Might be worth considering x

[Rosefern1966]

Hello, sorry to hear of your health issues. Im wondering if it may have links to Pelvic Congestion Syndrome PCS? Sadly not widely know about in the medical world. It’s not linked to gynaecology but vascular. I’d recommend getting all gynae & gastroenterology checked out if not all ready done so. Take good care

[Anna1101]

Hi

I know exactly what you are going through right now. This is called 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, vagina 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...

[CernCrystal]

Hi not sure if this will help - I like another person have removed starchy carbs and gluten from my diet totally and try to keep the rest of carbs to a minimum, plus the help I had was from an NHS Gynie physio who was amazing.

[saritaj]

Please look into a condition called Interstitial cystitis.

Maybe ask your GP for a referral to a urologist for them to do some tests

[M3t4l in reply to saritaj]

Thanks will do, i assume the urine test i've had wouldn't have checked this that i'm aware

[McGraw]

Have you heard of Dysorgasmia! I have suffered with chronic pelvic pain and spams after l have had an orgams or before . To cut a long story short. I have suffered this since l was 27, years old now l am 66 years old. Had total hysterectomy in my early thirtys. Adissons separated in 2014 and lots of other treatment. When it's very bad l have to go to bed. I have not worked for 6,years and my husband is my career he does all the heavy lifting and house work.I have just finished a 12'weeks free pain management course at the Nuffield heath centre it's run by there chairty.

After talking to my PT she said that she would look into my pain. And she send me this info I have never been told by many of Dr's about this.

I was so delighted with positive having a name for my suffering l called my Dr who just said that she had never heard of it and that was the end of our conversation.

I have been hurt by the NHS and have had some horrible things said to me from some surgeon's. And to be honest l fear going they have just made things worse for me.

Kind regards Carol x