In pain all the time and no diagnosis feel stuck in limbo

[Bluetiger1]

Hi all this is my first post sorry it’s a long one! I’m not yet diagnosed but have a lot of the symptoms and was awaiting laparoscopy this month until the current climate led to it being cancelled! I am almost always in pain in the lower abdominal region (pelvic mostly right side) I feel nauseous and have back pain as well as getting other bowel symptoms but I kept getting told from GP it’s IBS try dieting, exercising, other pain relief and felt really let down. It took me years to finally get referred to gynae (I’m 24) and after having an ultrasound (which was over a year ago) that showed no evidence of cyst I was told it’s probably not Endo which is very confusing to me as it isn’t necessarily cysts but adhesions and patches of Endo?? I feel like they don’t believe me and tbh I’m in 2 minds about getting a lap re-booked. I don’t know if to keep going with this if there’s a chance it isn’t Endo but I really feel it could be? I take paracetamol and anything stronger without caffeine as an ingredient (as it makes me feel ill) as well as numerous hot water bottles and baths. The nausea and pain most days are unbearable and working in a lab makes it hard to do anything about it as I’m always on the move or standing and unable to drink much water!

[veneerofclass]

Hiya there, I just wanted to drop you a message as I have been in almost the same situation. It took me about 7 years to finally be listened to about my pain and was told for the longest time that it was “normal”. An all too common story sadly. I’m so sorry that your lap has been delayed and I hope that after all this is past you get one soon to have some answers. But I just wanted to say as someone who has been diagnosed, your symptoms are the same as mine. I got extreme nausea from the pain and of course the physical excruciating pain around my time of the month mostly before my lap. Like you I had an ultrasound done finally when some lovely new doctor at my surgery recognised the symptoms and how much they were impacting on my life. This ultrasound showed absolutely nothing so that ruled out cysts as endo doesn’t typically show on ultrasounds (It can as I know now as my bowel is attached to my ovary because of it since the surgery - im one of those unlucky people who it’s grown back on after excision in just two years) but yeah point is the fact that it was clear pointed them to me having endo.

I know you can’t have your answers yet but some of the things that helped me was being on the pill back to back to stop my periods, and having anti-sickness meds to help control the nausea. I’m still on this treatment after my lap, just with the addition of some nerve medication called lyrica/Pregabalin which helps prevent the pain as I now otherwise would get it all month. I have stronger painkillers since being diagnosed and have had success with tramadol, morphine and naproxen, and over the counter codeine before my diagnosis Naproxen should be easy enough to get if you have a doctor worth their salt without a diagnosis same of course with over the counter codeine. The other thing I’ve found helpful that you should be able to get is CBD oil. I’m sorry I can’t help more and you may have tried some of this, but just wanted to put something out there as there are some things you can do even if you’re doctors aren’t taking you seriously. I hope it helps and take care of yourself.

[Bluetiger1 in reply to veneerofclass]

Thanks so much for your advice I had honestly been back and forward at GPs for years before I got an amazing doc who decided to go down the gynae route! I had mentioned paracetamol wasn’t enough but she didn’t want to give me stronger pills to rely on which I understand but I sometimes am at the point of going to A&E because of the pain! Will try over the counter stronger stuff! I haven’t tried CBD oil yet but I have heard a lot of people have found it has helped a lot so will look into this! I have been on the pill for almost 8 years now as I had really bad periods as a teen and noticed a massive difference not stopping it for a bleed so I’ve been doing that for the past year and I found my bowel symptoms really improved. Your reply has brought a bit of light to my situation as I’ve been feeling rather down with the cancelled lap so thank you for getting back to me!

[Bikergal900]

Gp's are very quick to blame IBS for many things. I too am awaiting a laparoscopy and havent yet received a diagnosis but your symptoms are the same as mine. Severe pelvic pain that goes up my right side with horrendous lower back pain, stomach and bowel symptoms all of which are worse before and during my period. You have to persevere and even if it turns out it's not endo so what, something is clearly causing you alot of pain and discomfort and you have the right to find out what it is and if there Is anything that can be done to help you. It sounds like this is seriously impacting your daily life so dont give up. Ask for stronger pain relief I currently take naproxen and codeine along with paracetamol and sometimes that doesnt even touch it, use hot water bottles and hot baths, cbd oil is supposed to be good aswell.

Good luck x

[Bluetiger1 in reply to Bikergal900]

It’s horrible knowing the amount of time I’ve waited for the operation but completely understandable due to the circumstances it’s been cancelled it’s such a shame a lot of people are in the same boat! I’m going to get over the counter stronger pain relief and will carry on with my hot water bottles and baths. I’ve been feeling really down so it’s nice to hear from other people who are going through something similar thank you and hope you get answers in the near future good luck to you too. X

[Bikergal900 in reply to Bluetiger1]

I too have been feeling very low, angry and sometimes feel hopeless when the pain is getting too much but I am trying hard to focus on the fact that there are others alot worse off than me currently and that going to hospital could be a great risk at the moment with the covid virus. I am hopeful this wont last forever and I'm adamant that I will get answers eventually. Stay strong and there are lots of lovely people on here you can vent and talk to, me included.

Best wishes x

[fdennis07]

Hi, so sorry to hear you are struggling with the pain. So disappointing also that your laparoscopy has been cancelled but you are nearly there and will hopefully have a diagnosis soon!

I would contact your GP and tell them u r struggling with pain and see if they can give you anything stronger. When I was in the same position as you before I had my laparoscopy, I was given naproxen to try and then mefanamic acid (some people tend to do better on one or the other).

Good luck and let us know how u get on xx