Pain from ribs to knees with added extras

[rubine7521]

Will try and sum up as short as i can, pain began on my right side in 2019 (painful periods for years before but told normal so i ignored it, didn't ease, had ultra sounds which showed ovarian cysts, told normal) bowels started to misbehave so sent for colonoscopy, all normal so told to adjust diet and get on with it lol

Pain has never gone only spread and increased. Due to period problems I thought it could have been endometriosis, had laparoscopy in 2021 with no biopsies taken told not that but could be adenomyosis and discharged.

in 2022 heavy bleeding started so went to gp, told to go on pill or have coil (no ta) sent away. bleeding got worse again so finally sent for scan in 2023 to find a polyp that was removed months later via hystroscopy. Periods now send me to the floor, so so painful and very heavy.

During this time bowels are still awful i have lost around 2 stone in weight (sent to weight loss people then told rudely that i had managed to keep my weight the same and why was i wasting their time!) Had gastroscopy which showed a coating of pus in my stomach to be told normal again!

So in this time still struggling to eat properly, severe pain after eating, pain very strong all the time in my abdomen and pelvis (pressure sharp stabbing needles) Now i have problems with pooping, not completing as it feels like something in the way front and back.

I have developed nerve damage to my left side, odd as pain started on the right, leg goes numb cant lift foot properly, back problems, weakness in hand and arm, dizzyness, changes to my vision, hip pains, groin and vaginal pain.

Sent to pain clinic where the mri of my lower spine showed some issues but told normal and shouldnt cause my pain, sigh..

My sister got real ill end of 2022 after her telling the gp there was poop in her urine for a YEAR! told by gp not possible 2 different systems.... my sister was right fistula between bladder and bowel nearly killed her! She was found to have crohns and had 60cm of bowel removed and bladder repair! So i struggle trusting and medical staff now.

I have been dumped into the pain clinic (after a very long wait over a year) seen the [pain doctor twice and given pregabalin, lidocain plasters, gabapentin cream and havent seen or heard anything since feb

At this point i dont know where to turn, they make it out like im making it up or because in 41 its menopause and im being a silly woman....

So now if i go to the GP they say why am i here, your under pain clinic go see them..

If i talk to pain clinic, they say its not us go to your gp...

I have prob left out some stuff to try to cut down the post, Not even sure why im posting this tbh but hey better out than in!

Keep sane and hope your having a low pain day x

[wobblybee Administrator Pioneer]

I’m so sorry…at the very least it’s possible ovarian cysts have increased in size and are causing one of your problems.

I can understand your frustration after knowing about your sister’s experience. But..the fact is, you really do need to stick with your GP for any medical investigation. The GP is the ‘gateway’ to referral. Research as much as you can relating to your symptoms, and when you’re confident about facts, present these to your GP…trying to remain calm and logical.

I know from experience how difficult it can be once a GP has decided a specific diagnosis is ‘set in stone’…it can be a real struggle to get any further investigation.

[rubine7521 in reply to wobblybee]

Thank you for your advice, i shall take note of this =) thank you for reading and replying, just nice to vent and be heard xx

[cherrytree16]

Hi

Sounds like you need a change of dr and a second opinion with what they are telling you I would ask for a different or more senior specialist to see you next time because it not right to be in so much pain plus impacting on the rest of your health something must b going on. Keep persisting until you get some sort of diagnosis, and if they ask why just say would you put up with this if it was you experiencing all this.

I had a hysterectomy in the end which stopped all the bleeding and pain.

Linda

[Bidgie]

So sorry to hear about your problems. I am now in my 80s but had some similar problems with my periods- very heavy and painful and took regular paracetamol, codeine and anti inflammatory ie strongest ibuprofen-type available which helped but everyone always said I looked pale. Did have polycystic ovary disease and very irregular periods. Also later got diverticulitis with severe spasms at times down my L side which needed 2 x 60mg codeine + 2 paracetamol and lie down for 40mins to ease. I still live with that 30 yrs later but take regular mebeverine and the severe spasms have gone with that and change to Mediterranean diet with no white bread, little or no pasta or potato. Still abdominal distension and L sided discomfort and sometimes under R ribs.I find Mindfulness breathing often helps and try to live in the moment. Do a bit and rest a bit.

Check you go to a good GP surgery with a good rating Keep a written diary for a week before you go to see a Dr and put in a written request to see a senior GP as it is so difficult to see the right person and receptionists seem to be told to try and put people off. You should have a 'usual GP' who should see you regularly. There is no record of what you actually say to anyone ,so always write down requests when you have something unusual, like you ,which doesn't fit into their computer programme!!

It is terrible these days, in NHS, which I did work for! but you have to make a nuisance of yourself and keep a regular written diary. All the best and try to walk for 10 mins a day-which I feel difficult to make myself do- but it does help!

[rubine7521 in reply to Bidgie]

Thank you for taking the time to reply,this is really helpful advice x Hope your doing well, I also work for the nhs so totally get the pressure they are under xx