Undiagnosed Pelvic Pain

[Husky47]

Hi all

I'm new to this community but was just looking for advice on pain management really. I've suffered with ongoing pelvic pain since I was 15 but the past 2 years it has become unbearable. I have had two laparoscopic surgeries to look for endometriosis but nothing has been found. During my last surgery adhesions were found which some doctors say is what is causing my pain, but others say it shouldn't be.

The pain starts around the 2nd of each month and lasts until around the 20th, always a week before my period. During that time I have constant pain and pressure in my pelvis and lower back. I get cramping pain that leaves me doubled over and being sick. I cannot walk and have to crawl to the bathroom. I have to use the bathroom more frequently as the pressure of needing to go makes the pain worse. At the moment I am spending 2-3 weeks of the month in bed. Sexual intercourse has always been very painful both during and immediately after, and bleeding always follows.

I saw a gynae consultant recently who said it didn't sound like period pain or endometriosis. He called it visceral hypersensitivity, which I later found out was a fancy word for IBS pain. He prescribed Mebeverine and told me to take it for a month with a pain diary. However I have been on these before and checked for IBS, crohns and collitis and celiac disease. I have no bloating, diarhea or constipation either. In the mean time I have no other form of pain relief other than paracetamol. The past few months I had cocodamol but my GP doesn't want to give it to me for fear I will become addicted. Their answer was to stay in bed and go to A&E when it's bad. As a result I spend all my days in bed, have had to take a year out of university and have no social life. I spend a lot of time crying or being sick and visit A&E every 2-3 weeks. Each time they are very kind but tell me there isn't anything they can do and tell me to wait for my gynae appointments.

I'm at a complete loss of what to do. I have seen a bunch of doctors, some say it's endometriosis and the others say it's nothing or they may never find the cause. I try hot water bottles, baths and have just ordered a tens machine. I just need a way of getting out of bed and preferably an answer to what is causing my pain. If anyone has any pain relief advise or experienced similar symptoms please get it touch. I am feeling very alone and isolated and it is very hard to explain to my partner how I am feeling. A lot of the time his answer is just find a way to get on with it. I am not sure how else to do this though.

[Rocky68]

I had endometriosis which was not discovered until I had a hysterectomy. I had laparoscopic surgery since my Pain left me doubled over like I had been stuck with a knife. The Dr told me I did not have endometriosis. Pain started just before my period and I had horrible bleeding. I'm not suggesting you have surgery but wanted you to be aware you can have endometriosis which does not show up with laparoscopic surgery. Rocky68

[Ih8fibroids]

I'm so sorry you're in pain. Have you ever received an ultrasound or CT scan? Have you been checked specifically for uterine fibroids? If you do have fibroids, it is also possible you're going through what DR's call fibroid degeneration. It's when the fibroid(s) die. If the drs are not able to find anything, I would suggest going to your gyne & ask for them to check for this. Also, another possible condition came to mind, maybe get checked for ovulation pain, as you did mention the pain is extreme before you start your menstrual. I wish you well & hope you find out what it is so you can get treated asap.

[Clareffb]

Sometimes a way to kick start things (if you can) is to pay for a private consultation, they can usually refer you on to the nhs service after. Also, if your pain isn’t responding to normal painkillers it may be neuropathic, which only really responds to things like Amitriptyline etc...I wish you luck, and you have my sympathy.....oh and your gp sounds rubbish, can you change?

[Hidden]

I know this is basically the 'yoga and meditation' approach to pelvic pain, but have you tried like pelvic therapy? If it's painful during sex or in a certain place it could be pelvic floor muscles, you can often feel by doing a sort of internal massage and seeing if there are any spots that are tight. And if nothing comes of it, then at least you can tell the doctors you tried and they can rule out another option. Hoping you get your answers soon x

[Desdemona]

Hi, hoping you are feeling better now or found a resolution but I have just joined and noticed your post. I have been recommended to use CBD oil to help with pelvic pain, have you tried that? x

[Husky47 in reply to Desdemona]

Hi, thank you, I am still feeling pretty rough but finally getting somewhere with the doctors. They found evidence of intistital cystitis and I am awaiting another biopsy and then they want to bring me in for instillation therapy which I am hoping will help. In the meantime it's backwards and forwards for pain management. I haven't tried CBD oil or ever heard of it, but I will try anything so will have a look into it. I hope it helps you too and that you start feeling better as well. Thank you for your reply x

[dottylots in reply to Husky47]

Hey, I know this is an old post. I hope everything has improved for you!

In your initial statement at the start, was the pain starting just before your period starts? Or do you find relief when you are on your period?

I have chronic pain all month long until I’m on my period where I have some relief. GP & gynaecology hasn’t been much help so far! And can’t find anyone in the same position atm 😩

[Husky47 in reply to dottylots]

Hi, I'm sorry you're struggling. At the time it did start before my period and get worse during. However I haven't had a day pain free at all now for about a year. In July last year I was officially diagnosed with interstitial cystitis. I was told periods can make it worse because if you get cramping in your pelvis it sets your bladder off with spasms. My periods are a major trigger for my pain, as is stress. But it never really goes away anymore and there's barely a pattern to it. I'm not sure if your issue is the same thing but if you have frequent or urgent urination (I go between 20 to 50 times a day), painful urination, pelvic pain ect then it might be worth asking your docs to take a look at your bladder just in case. I was told things like endometriosis and ic can present very similarly so it is hard to diagnose. I'm sorry I couldn't be more help but I really hope you find some answers soon and start feeling better x

[dottylots in reply to Husky47]

Ouch! 😩 I swear each month the pain gets worse for me also! The GP initially suspected IC due to my bladder/urgency/dribbling without feeling it... but it’s not as bad as 20-50times a day! That must be difficult in daily life ☹️ I hope you can get some treatment to help ease the pain and frequent urination 🌻

[Husky47 in reply to dottylots]

Have they done a cystoscopy or any investigations for IC? I'm on a lot of forums and some people don't have the frequency as much so you could still have it? It's been a nightmare I can't work and am on disability so go very stur crazy at home. But things are improving slowly with treatment so it's not as bad x