Hi All,
New here and would like to firstly send out my love to those of you struggling with pain.
I have come here to share my (long) story to see if anyone has any ideas, any trees I can try barking up, any words of wisdom or guidance.
possibly relevant history:
Female, 37 years old.
X 2 C sections - 2015 & 2021. After 2015 I experienced what I think was vaginismus for 10 months and significant systemic joint pain of unknown cause for around 13 months. Did not experience either after second birth. No other surgeries.
PCOS - diagnosed many years ago. I always have 'bunch of grapes' ovaries on ultrasound. Irregular and heavy periods (sometimes only one or two per year) lasting around 10 days. Since having children (did not require fertility treatment) they have become more frequent but still totally irregular. First day of period is painful but not debilitatingly so, the hormonal run up to the period is the worst bit as I am like the devil. Copper coil fitted for contraception in April 2023 - removed June 2024, made periods heavier but removed due to current pain issues to rule out not the coil causing it.
Anxiety - for many years. Have been on Sertraline since 2016. Overall well managed although peaking at the moment.
?ADHD - awaiting diagnosis (very long wait).
Bladder issues - began in 2018 with repeated UTI symptoms but often no actual infection showing on tests so not treatable with antibiotics. Frank blood in urine, intense urethral burning and stinging, bladder pain and pressure. Cystoscopy in 2018 showed bladder inflamed in areas but no tumours etc and so urology didn't follow up. I believe triggers to be sex, intense stress and sometimes periods. Comes and goes. I have always thought this was IC but never been diagnosed. No incontinence issues. Have had random flare ups, the last being a couple of months ago for a couple of days, but generally is not an every day issue for me at the moment.
Miagraines - appear to be random in occurance, can last a couple of days, can be debilitating. Tramadol and Naproxen in the cupboard for these but normally just have to wait them out. Never had any other treatment for them.
Current situation:
A new pelvic pain started in January, which initially I thought was just some hefty ovulation pain. Ovary area on right with gnawing pain in sacrum and pain up into the right flank area. Just randomly occurred, lasted for various amounts of time, could mainly just get on with it. Period came and went, but pain remained so became obvious it was not period pain. Noted occasional pain in rectum.
By March the pain was coming in 'attacks' and were severely painful and have continued since. Pain in the same areas (right ovary area like a stitch pain, right flank dull pain, gnawing pain in sacrum, and spasming/shooting type pain in rectum, general tenderness and discomfort all over pelvis). I am also now experiencing sharp shooting pain up into the labial area, but not always. Attacks come from nowhere, last 20-40 minutes and then just stop - I am writhing round and can't talk for the pain, or be touched - feel nauseous with the pain. After an attack I am exhausted and want to sleep. Can have days where I have 4 or 5 attacks, others where I have 0-1. Had a 2 week span with no pain at all somewhere in April, and sometimes will have one or two days of no pain, but other than that it has been a persistent feature in life and the severity of pain has only increased. Outside of having what I describe as 'attacks', I also get 'threatening' periods of time where it feels like it is all going to start up, but doesn't. They can last for a few hours and it either settles or all kicks off into a full blown attack. Do not need to pee or open bowels and neither gives relief to pain. I use a heatpad which brings some comfort but does not get rid.
Only thing I can compare it to is labour, but worse as it is persistent and I don't get a lovely baby at the end of it. I can't tell if it is gynae, gastro, MSK, nerve. Some attacks the pain is more in one area than another, but always the same areas.
Pain happens at all times of day and night, including during sleep sometimes. The only trigger I can identify is it can sometimes happen after a bowel movement, but not always. Occasionally with bloating, but not always. No diet triggers identified.
Investigations:
GP March 2024 - full bloods and ultrasound ordered. Bloods came back normal aside from slightly raised CA125, which triggered me to see a Gynae privately. GP unsure - queried IBS, endometriosis but nothing adds up. Cannot advise any analgesia other than to just take tramadol prophylactically daily which is not realistic. Various stool samples sent including bowel cancer screen - all normal.
Gyane March 2024 - Pelvic ultrasound showed PCOS but otherwise normal. Gyn recommended physio and gastro. GP prescribed buscopan ?IBS.
April - another pelvic ultrasound and abdominal ultrasound, both normal. Had a period of no pain, fooled me into thinking maybe it was all over.
GP - May 2024 - abdominal palpation normal, repeat bloods all normal, urine normal, buscopan not helped, prescribed mebeverine. Removed coil incase it was that causing all this. Made no difference.
Pelvic Phsyio - May 2024 - identified that I am tighter in right side of hips and pelvis. Helped me identify that I am always tight in my pelvic floor and have overactive glutes. Gave exercise to relax pelvic floor and stretch out piriformis etc. Visualisations for pelvic floor. Advised psychosexual counselling to support physio work. Advised on some dietary things to stop, like my couple of cans of diet coke a day habit, which I have stopped completely. Query levator ani syndrome but not all symptoms add up.
GP June 2024 - bewildered as to what to try when I presented after 3 days of lots of attacks. Advised to try amytriptyline but it is contraindicated as I have a cardiac arrythmia. Advised to try buscopan and meberevine together. I have not continued with them as actually feel they make it worse and increase frequency and severity of attacks.
Gastro July 2024 - rectal examination normal. Has prescribed another anti-spasmodic (name has escaped me) which I am yet to start but will try. Advised me to consider starting pregabalin - not keen until I know what is going on tbh and not keen on taking that drug for many reasons so I haven't started yet but it is an option. Referred for pelvic MRI. Awaiting date. Suggested could do laparoscopy to exclude endo but not at that point yet, rule out other things first he said.
Physio July 2024 - Internal examination showed tension in superficial pelvic floor muscles and exercises given, but deep pelvic floor normal. Physio feels this is not levator ani syndrome and is unsure of cause. Noted mild vulvodynia to right side of vulva but does not feel that explains all this pain. No obvious C section scar adhesions found.
I am taking daily probiotic and trying to increase prebiotic intake to support gut health. Diet is normal - could be better could be worse. Not a regular exerciser but starting to do more walking. I'm not overweight and generally otherwise well. Trying to find more time to relax but I have a hyperactive mind and have never relaxed well so I find that challenging. Also I have two young kids and run my own business so of course, like everyone, finding the time to prioritise that is not always high enough on my list.
So this is where I am right now. Awaiting MRI of pelvis and starting pychosexual counselling this week and don't know what else to do. It's affecting every aspect of my life now and causing anxiety through the roof as living with unknown of when pain is going to take me out and unless I am wrecked on opiods all day 'just in case', there is no analgesia that works fast enough to stop an attack as it is over before it kicks in. Am yet to try an elimination diet but this is on the list of things to try - but I am just not convinced that this is IBS that has just arrived out of nowhere, although I have always been a kind of prone to heartburny, slightly unpredictable bowel person, but nothing that has impacted my life like this or ever needed treatment.
After seeing physio today I am even more baffled as muscular looks unlikely cause now. Things that keep cropping up are ?endometriosis (although this does not seem to be heavily related to my cycles) and ?IBS. I am wondering if it's a combination of things.
If anyone has anything at all that they could share with me or suggest at this point in terms of routes to take to explore, I'd appreciate it as I am starting to feel quite down about this.
Thank you for reading my essay.
X
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