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
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rubine7521
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I had endometriosis which did not show up laparoscopically. And then I finally had a hysterectomy. The doctor said I had endometriosis, and it had to be scraped scraped from my rectal area.
I have been told I have chronic pelvic pain. At first they thought it was pudental. Neuralgia, then levator ani syndrome and then perineum problem I have tried everything from having Coccyx removed to a stimulator implanted, and nothing has helped.
I tried the gabapentin and it did not help me but Pregablin (Lyrica) does I take 150 mg in the morning and the same amount at night. Please begin at lower doses and work to a higher dose. If you don’t it can cause problems. I also take 60 mg of Duloxetine once a day. I take 50 mg of tramadol along with at least one 500 mg tablet of Tylenol
I can take four of the tramadol‘s a day. I use metrocarbunol I Robaxin for muscle spasms as well as .5 mg of Ativan.
These meds get me through the day and night. If I go on a long trip, I’ll take my Robaxin an Ativan. If I take a long car trip I take blanket and pillow and lie in the backseat. Take Robaxin and Ativan when trip begins. I can sit for about 30 minutes without too much pain. Trust me, I have been to so many doctors, physical therapist, pain management specialist, chiropractors, etc I cannot lift anything heavy, or get in a squatting position to work in the yard. I have to hire someone to clean the house and do the lawn work. I struggle some days with low back pain, nerve pain, going down to my feet and just take the medication to get whatever relief I can.
I don’t know how your medical system works as I am in the United States. But there must be some doctor there who can tell if you have chronic pelvic pain causing your other discomfort. Perhaps someone in same medical system who reads this post can provide a Dr name for you. I wish you the very best. Rocky 68.
Just wanted to say that you are completely correct to not trust anybody who makes you feel like you feel. A lot of GPs just look at other GPs notes and agree with each other.
Anyone who makes you feel like you are suffering from the Menopause at 41 and therefore go away, wants to resit their exams. Ask for the blood test that shows follicle stimulating hormone and luteinising hormone levels and tells GP if you are Peri-menopause!
Every so often you get one who actually listens. I am supposed to have been suffering from Diverticulitis for a long time. One older GP decided something more was going on recently and I found out yesterday it is a kidney stone. Ultrasounds have never picked it up. Gets on my nerves!! If you have a few issues going on at the same time they only listen to your first few words and they make a decision. I have been suffering Diverticular issues for years. Bladder issues started in 2019. My Menopause caused me to lose my career age 52 in 2015 because of a complete nervous breakdown and an unsympathetic professional body /employers. So as soon as I hear of a Woman not being taken seriously at any time in her life I get defensive.
They are not taking proper notice of you.. simple as that.
I have several occasions in my life where Dr’s have ignored, disbelieved etc.. but always trust your own instinct.
Your poor sister. She really should be putting in a complaint. Anyone with poo in their wee is showing signs of a fistula.
My advice. Phone 111 when your pain is flaring. They have a new system being trialled in some areas. I hope you live in an area where this could work. Phone out of hours. You will not upset emergencies because it is a new system specifically designed to cut down the pressure on the emergency side of A&E. They send you to a triage nurse at A&E who then assesses you and give you an appointment back at A&E later in the day depending on level of need. This then gives you access to a registrar who will actually examine you and listen. A long wait I know but you should then be seen by someone more specialised. I was sent to Surgical Ambulatory( walking wounded) Then I got access to a Surgeon registrar. I then got access to fairly urgent tests . I had a CT and a Cystogram two weeks ago on 21/24th August after attending A&E on 2nd/4th/9th August because of my pain. I basically got the tests a lot sooner than the referral route. Coincidentally I just saw the Gastro -enterologist my GP referred me to 6 weeks ago and he was pleased I had the tests . The silly thing was that he was in another area and could not look at my results. All the Specialists I was offered on NHS are not in my area so it just amazes me there is no communication.
Just a footnote after my long rant.
The bowel refers to the lumbar 3 disc and it mimics the pain of a slipped disc causing tingling and numbness down your leg and pain in the groin. So I wonder if the bowel is causing part of the pain if you get constipated? Also look into Spastic Colon and the need for specific antibiotics because the bowel may be infected and not working properly.
Take care and remember those that don’t shout don’t get! Sending you to a pain clinic is not sorting out the root cause and is just masking the pain .
I'm so sorry you are going through all of this. If you can scrape the dosh together try going private. The NHS docs don't put enough energy into cases like this.Try London Gynaecology
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