AGONISING Undiagnosed Pain at 22. :-(

[pontymython]

I'm so so sorry if this post goes on for a while, I've been in so much pain for so long and I had no idea there was somewhere I could go to talk about it where people would actually understand, and I've just been struggling so so much - mentally as well as physically.

Here's the situation as briefly as I can manage it:

I'm a 22 year old woman with a previous diagnosis of vulvodynia/vaginismus (which is pretty much cured, but has stopped me from being sexually active - which rules out some things for sure!), IBS, Pre-Menstrual Dysphoric Disorder, and PASH of the Breast - the latter two both probably caused by being bunged on the contraceptive pill/a couple of hormonal things at 13/14 years old when my excruciatingly painful and heavy periods were making me miss too much time off of school. Doctors were still trying to force me to take it when it was making me intensely depressed and all sorts of other weird symptoms, and as I say, I've had problems ever since. I just took myself off of it when I was about 15, and was finally diagnosed with PMDD and PASH over the last few years.

About a year and a half ago, I started getting mild pelvic, lower back, and bum pain once or twice a month after going to the toilet, but it was just sort of assumed to be part and parcel of the vaginismus - perhaps a bit of pelvic floor tightness. However, it's worsened over that time drastically - I can now no longer leave the house because of it. I graduated university last summer and had to move back in with my parents (who don't quite seem to grasp how bad the pain is either) - I'm in too much agony to work, and I've had to repeatedly put off doing my Master's Degree because I am just in too much pain to even think half the days.

I've lost count of how many appointments I've had about this - I've had it brushed off as just a bit of constipation, been told it's probably just me (whatever that means), but I finally last month managed to get taken in for some ultrasounds to rule out uterine/ovarian growths and some urine/blood tests to rule out any infection or inflammation - everything came back clear, although the ultrasound woman did say something about one of my ovaries for some unknown reason being difficult to see on the scan - she did say however that what she could see of it looked absolutely fine. I'd also recently had an unrelated random colonoscopy a few months prior just to check the IBS diagnosis was accurate (despite the fact I've had it since childhood), so that does I suppose also rule out a fair bit.

My personal bets are on it being endometriosis, interstitial cystitis, and/or pelvic floor congestion (springing from the suspicions of some A&E doctors who, whilst giving me some urgent pain relief once when the pain just got unbearable, spotted some visible blood vessels and swelling around my pelvis area who irritatingly enough never noted it down or tested for it so whenever I bring it up, I'm told I was just seeing things). I've been at a stand-still ever since because, apparently, it seems testing for endometriosis/interstitial cystitis is off the cards for me unless I go back onto hormonal medication - which obviously, given my history and current DIAGNOSED medical conditions caused and made worse by hormonal treatments, I refuse to do. So for now, it seems I'm stuck. My one hope is a local NHS mental health nurse who's very familiar with PMDD who may be able to write a letter of support or something, but I'm not sure if that can help.

I'm so sorry for offloading SO MUCH to you here folks, I'm just at my wits end with this. Absolutely nobody seems to be taking me seriously with this and yet I am in AGONY CONSTANTLY. I used to be an incredibly active, incredibly independent and happy-go-lucky person and yet I've spent about 9 months barely able to get up from my bed, barely wanting to eat from the pain, and as a result feeling exhausted, irritable, and depressed all the time too. It just feels like my entire life's been snatched from me and absolutely nobody believes there's anything the matter. It's unbearable and so isolating.

If anybody has any advice/is in the same boat I would absolutely love to talk to you. Thanks so much for reading this INCREDIBLY long post.

[kalecolbe12]

You need to go on the Facebook groups for endometriosis vulvodynia , pelvic congestion syndrome and pelvic floor dysfunction....all four groups have great people ...I belong to three of them because I've had pelvic floor dysfunction for the last 3 years and I went to pelvic floor physical therapy which seems like you may need to do the pelvic floor physical therapists are amazing and they are to be found in places that have physical therapists if you have a decent insurance they should cover it you may need to see your gynecologist too but a pelvic pain clinic would be best anyway I ended up even though I was getting better from the pelvic floor pain I ended up with extreme anxiety and depression because I lost some friends from covid and going through the covid situation for all of us has been distressing anyway I went on a antidepressant anti-anxiety nerve pain medication which I'm really happy with so far so you may need to go on something like that there are quite a few choices like Gabapentin Cymbalta, amitriptyline Lyrica.... and there's also naturopathic stuff like CBD and THC you can also get suppositories made of valium to go in the vaginal/ rectal area... Whichever the pain is in but suffice to say there are lot of treatments available.... Another thing you're going to have to probably do is break the pain brain cycle since the pain is chronic now and the brain recognizes it too much and too often so download the pathways and the curable apps and you can do some of the the work on that for free until you decide if it's going to work for you it really does help break the pain cycle it's helped me... I also go to therapy once a week which I will go down to once every two weeks soon and it's helped ...when you're in pain for a long time you just start needing to intervene whichever way you can but it's important to go to a pain clinic to lessen the pain so that you can start recovery... I hope this helps

[pontymython in reply to kalecolbe12]

Thank you so so much (and apologies for taking a while to get back to you!)! I'm so sorry to hear of your losses from the pandemic, I hope you're doing okay! I think I already belong to the pelvic congestion syndrome group, but I'll join the others for sure - I do currently take CBD supplements for my mental health, but I can always see if there's anything that addresses pain and mental health at the same time!

I'll take a look into pelvic floor therapy and pain clinics - thank you so so much for all the wonderful advice!!

[edythe]

I’m very sorry to hear of your pain and distress. Kalekolbe has given you a whole bag of good ideas as to where you might start to find help. It seems to me that first and foremost you need a medical professional who is willing and able to look at the whole picture and to take you seriously. Perhaps if you said where you live somebody could give a recommendation. Have you got a GP?Especially as during these Covid times many hospital appointments are being severely delayed I wonder if finding an expert women’s physiotherapist would be a helpful way forward. Even if she could not give you the treatment you need, she might be able to recommend a suitable clinic/doctor/consultant.

You can use Google to find aPT but also use the search function on this website. I do hope you can find help asap.

[pontymython in reply to edythe]

Hi there! Thanks so so much for your reply, and sorry for taking a while to get back!I do have a GP, but the UK NHS works in a way that you have to be seen by a GP and get referred directly by them to people like physiotherapists etc, but only if they think it's suitable - and as it's them who have been working with my case so far, I'm not sure I'll be getting very far with that. 😔 I will definitely bear this idea in mind to bring up in appointments etc on the off chance I can persuade them though, as it does sound like it could help for sure!

[Konagirl60 in reply to pontymython]

Can you hire a private nurse consultant OR see a pelvic pain specialist privately? I think you need to rule out pudendal neuralgia.

Bring your Mom or Dad with you to your next GP appointment. I think you’re being dismissed and not taken seriously enough. Women are often treated this way. Good luck. Insist on seeing a specialist.

[lolatx]

You’re symptoms sound exactly like endometriosis. I suffered the same pain for 20 years before being diagnosed. Recently had excision surgery and I feel like a new person, finally. The pain had gotten so bad I was on daily regimen of hydrocodone and tramadol just to function. Check out Nancy’s Nook on Facebook. It’s a wealth of information on Endo and how to find help. I’m sorry you’re not being taken seriously - that’s the life story of people with endometriosis. It’s a tragedy and you deserve better. I wish you the best 💕

[pontymython in reply to lolatx]

Hi there! Sorry for taking a while to get back to you, thank you so much for your reply!I'm so sorry this happened to you too, it's absolutely awful. Although I'm so glad you've managed to have an excision done!!!

I'll check out Nancy's Nook for sure, thank you so much!

[Arny1973]

I second the curable app and a book called the way out by alan Gordon for breaking the pain cycle . Ask your gp to refer you to a pain management programme also and they may discuss medications as well as ways to self manage pain .

[pontymython in reply to Arny1973]

Ahh thank you so much, sorry for taking a while to reply! I'll check out curable and the way out for sure. I have my next appointment some time in February, so I'll bring up medications and pain management programmes then. Thank you!

[Tonibrown]

Hi I’ve had the same symptoms as you have pain in my back around my undercarriage. I’ve heard when your MRI scans x-rays ultrasound , I was also so told they could not see one of my ovaries one scan from the outside but could see it from inside even though I weigh 6 1/2 stone you should be able to see through me. I’ve previously had three children all normal vagina delivery and have never had problems but when I lost so much weight because my bowels feel all twisted and hard I was struggling to swallow food they told me it must be the menopause. This has been going on for now more than two years I’ve lost my job for 14 years gas safe registered gas engineer I’m now worried I’m going to go lose my home. I was also booked in for an scheduled Colonoscopy, I opted for no pain relief so I could see what was going on, I did not feel a thing it felt like they pretended to do it and then I was discharged and told there was nothing wrong, I told the nurse I still had the same symptoms she then said I must have psychological problems, I changed GP and complain further the MRI scan showed both large and small bowel is mostly collapsed, they said it means nothing it’s normal, complain further then I was told I have a grade 2 recto-rectal intussusceptiom and bowel loops,.still no treatment,I went to A&E they wrongly put me in the covid ward,and sorry after I complained,I’m in so much pain all the time sitting with pain at the backs of my thighs undercarriage Bottom back and under my arm pits,I can’t work,drive,I only leave the house for Appointments when my son takes me,feel so alone, Lost my friends social life I’ve got nothing left.

[Tonibrown]

Hi