After 13yrs finally have an answer!

[Mrsma]

Warning, could be a tad too much information for people below!

After 13yrs of symptoms and issues I finally have a diagnosis!! Symptoms started just after my second son was born although thinking back now I think I had symptoms in my teens.

Fobbed off by many GP’s and then finally found one who listened last year. She referred me to gynae, saw gynae who referred to gastro and were supposed to put me on a waiting list for laparoscopy. It transpired in April this year that this didn’t happen. Gastro did tests and back to gynae. Saw a different consultant who couldn’t apologise enough and placed me on the waiting list as urgent.

I had a diagnosis of IBS when I was around 15 and then PCOS when trying to conceive both my kids. Also developed really nasty left sided hip pain in 2015-2016, referred to orthopaedics who did an MRI and all clear. Told it was just one of those things and I needed to strengthen my hips. I am a runner and was training for marathons at this time. No matter what I did the hip pain was still there.

Diagnostic surgery finally done on Wednesday afternoon, reg came to consent me and I told him my biggest worry was them not finding anything to explain the pain. He told me that 90% of the disgnostic laparoscopies find nothing and they were expecting the surgery to take between 30-60 mins. Consultant then came to see me and really recommended that I gave consent for merina coil to be fitted while I was under GA if they found anything. I agreed to this as would do anything to get rid of the pain.

Arrived at hospital at 12:00 and was lucky to be first on the list so was in theatre at 13:30. Next thing I was aware of was hearing part of the handover to the recovery staff. They mentioned a mirena coil had been fitted and I nearly burst into tears as I knew that meant they had found something. I then looked at the clock which was 16:50 so way longer than the 30-60 mins they were expecting. First words out my mouth to the recovery staff were “did they find anything?”. The nurse told me that they had found endometriosis and that the consultant would come and talk to me once he was finished the list. I nearly cried with relief! Finally I had a reason for the horrific pain I was in half the month opening my bowels!

The consultant came to see me a few hours later when I was on the ward. He said they found endometriosis in my pouch of Douglas and my sigmoid colon was adhered to my pelvic wall. This explains the hip pain that Iv been experiencing on the left side. If I wasn’t away with the fairies I would have jumped out of the bed and kissed him! He has separated my bowel from the pelvic wall and got rid of as much of the endo as he could. He was really honest with me that it’s likely to come back and that the fact it has impacted my bowel makes this even more likely. He also said he was relieved I had first on the list for theatre.

Recovery so far has been a mixed bag. Felt really rough when I woke up, light headed and faint. This resulted in a longer hospital stay than was planned for. Since being home Iv felt ok, then in huge amounts of pain, then sick then knackered! Got some stronger pain relief from GP which has really helped and managed a 10 min walk this morning. I’m bleeding which I was told to expect and this is going between light to very heavy. Not sure if it’s the coil or the surgery. Just so so glad I have answers and if it was up to me I would give the consultant a knighthood!

Understanding around this condition is so so poor and I’m so so grateful for the amazing gynae consultant o was referred to who listened and took my seriously. Surgery took just under 3hrs. Feeling a bit sorry for myself especially as I can’t exercise for 6 weeks due to the surgery. Can attempt swimming after 2, I normally exercise 7-9 times a week and was training for London marathon so that’s all going to have to take a back seat for now 😥

If any ladies read this and think they recognise the symptoms please go to your GP, if they don’t listen (one of mine dismissed me) find another and keep going till you get answers. No woman should have to suffer like this xx

[ZiggyandBC]

Hi, so happy to hear you finally have the answers you’ve been looking for! It’s so so relieving to find a doctor who actually believes you and doesn’t try to fob you off! I’m due to have my first laparoscopy next Friday and I’ve been booked in for a 2 hour surgery as I have an endometiroma in one ovary so I’m terrified of what they’ll find and if I’ll be able to have kids! I’ve been Googling like a mad woman and everything I’ve seen is so negative about fertility and endometriosis, especially when it’s severe which is what I’m scared of! My consultant told me I’d need 2-4 weeks off work but I do quite a physical job so I’m worried I’ll need longer off! I’m just hoping for some good news next week! ❤️

[Mrsma in reply to ZiggyandBC]

I hope it all goes really well for you. Mine was supposed to be a diagnostic lap but that soon changed when they saw what was going on. I really feel for the people who were after me on the list! Google is most definitely not your friend when it comes to this sort of stuff. I have been hugely fortunate and have 2 gorgeous boys but was referred for fertility treatment with my second, fell pregnant while waiting on tests. All my scans and tests came back negative. Even had an MRI for hip pain that didn’t show anything. I’m just so so relieved that there is a reason for the pain. I was dreading waking up to be told “all normal”. When I overhead that I had a mirena coil I could have cried as it meant they had found something. Will be thinking of you and really hope you get the answers you need x

[Mrsma in reply to Mrsma]

I’m a nurse so a very physical job. Been given a 2 week certificate to start off with which they will extend if needed. It’s fairly likely that they will need too. Luckily I’m term time only so finish for 6 weeks on the 21st July. Will only have 3 weeks to go by the time I’m back x

[Thecraftyadder]

The best words I ever heard were 'I think I've found the reason for your pain'. I remember coming to in my hospital bed just thinking 'they found something! They found something'. For me it took 18years. It's much too long for us and I totally agree with what you said for ppl to keep going, but your diagnosis is a victory. I'm pleased you finally have answers and wish you well with your recovery

[Mrsma in reply to Thecraftyadder]

I completely get what you are saying. When the consultant came to see me he said “well we found a reason for your pain”. I nearly burst into tears and if I hadn’t been away with the fairies I would have jumped out the bed and kissed him. After 13yrs of being told all was ok Iv never been more relieved to find out there is something wrong!

[Mrsma]

It was like something was pulling really bad and it felt hot if that makes sense. I’m out of running for 6 weeks now and have had to defer London marathon but I’m really interested to see the difference when I get back to it. I was seeing an osteo weekly which helped but I’m just so glad they think they found the real reason!

[Laurak26]

Hello

Sorry to jump on an old post - I’m waiting for my first gynae referral in June. What were your pain symptoms like?

I’ve had left sided tummy / hip / under rib pain since January, it did calm down in March but has been crazy since I missed a pill a few weeks ago…

I feel like someone is twisting my insides, it cramps and such. When I’m lying down or walking it’s better, but it just feels like everything inside me is fighting each other 🤦🏼‍♀️ My left arm is now also hurting sometimes, and my left leg - but I’ve always had “achy legs” for as long as I can remember.

Thanks in advance.

Laura x