Advice/Guidance re potential Endometriosis

[jcb12]

Hi everyone, I’m 22 and I’ve always suffered from very painful periods along with pelvic pain just generally everyday, sometimes worse than others.

I would have days off school and when I started working thankfully my employer was understanding enough that I was able to sit with hot water bottles (seems to help sooth the pain slightly as painkillers don’t seem to do much),let me walk around or go out the back and just cry or send me home.

Anyway in August 2017 I had a normal ultrasound and a transvaginal ultrasound which just revealed I had a tilted womb (I only found this out in January 2019) and obviously nothing else was done, the doctors told me the pain I was feeling could be due to anxiety or IBS so following their instructions I did a food diary which revealed nothing and took anti anxiety medication which only made me feel worse. I went back a few more times and was made to feel like I was making the whole thing up.

At the end of last year the pain and other symptoms got to a point where I realised it’s been a couple of years and it was effecting my everyday life and starting to get me down so I called the GP and again was referred (they forgot to send the referral so I ended up having to wait nearly 8 weeks) for trans and normal ultrasounds for nothing to be revealed. Finally 4 weeks after the scans I saw the same GP i’d spoken to on the phone (they haven’t seen me in person for atleast a year regarding these ongoing issues) and she did an examination and referred me to gynaecology as she suspects I have endometriosis (I have 3 family members who have this or PCOS).

I am relieved that something is finally being done but also wondering if anyone who’s been in a similar situation could advise me of what the steps are to finding out if I could potentially have it and if the pain and other symptoms improve or are eased with certain medications or home remedies?

Any help or advise would be really appreciated as I’m seriously at my wits end with it all now.

Side note: I can’t take anything with codine in it as I have a reaction to it.

[Hunt1610]

Hi Jcb12,

Really pleased to hear you have finally got a referral. Your story sounds really similar to mine, I’m 28 first went to the doctor about my periods not long after they started at 14 and have had an ibs diagnosis since then too. I’ve lived with daily pain for years, sitting at my desk with a hot water bottle.

Endometriosis is in my family too and it’s always been at the back of my mind it could be that, but I would go to the drs about different things - periods, ibs, bladder and they never made a link. That was until something finally clicked in my mind that they could be. I started getting this weird cramping pain when I started running regularly but only after ovulation had happened.

I think getting older focused my mind on fertility in the future and I went and luckily the gp referred me.

I saw a gynaecologist who asked me about all my symptoms and generally health and did a transvaginal ultrasound, nothing showed up, except a tilted uterus, but she said she could tell I was tender, not just from anxiety of the procedure but because I was, and she suspected Endometriosis.

She recommended a laparoscopy to diagnose and treat if found and insertion of Mirena coil. Despite my doubts about both I went ahead with them and the surgeon found it in several places.

Recovery is going ok, except for some weird pains I’m hoping will ease, and haven’t bled much or bad much cramping from Mirena.

Not sure what my next steps are yet, still recovering so yet to see if my symptoms improve - particularly if i have ibs and endometriosis or whether it’s always been endometriosis.

Sorry for the long post, but I hope hearing that helps. The confirmation through laparoscopy that it hasn’t all been in my head has been overwhelming for me but in a good way.

Any questions just ask

[jcb12 in reply to Hunt1610]

Hiya,

Please don’t apologise for the length of the reply - the more info for me the better!

I’d like you never thought about it, weirdly enough it was something my boyfriend had said that made me question it and google it!

How did you find the laparoscopy? And how long ago did you have it done?

I hope that things improve for you and I’m glad you got to the bottom of it. It’s so horrible feeling like it’s all your head isn’t it, I’m just so sick of it all now and want / need answers 😩

Again, thank you so much for sharing!

[Hunt1610 in reply to jcb12]

You're welcome.

I really hope you get the answers too!

I had it done a week ago today, never had anything like it done and was so scared about the whole process but it was actually so much easier/less scary than I thought. I made them aware of how nervous I was, in particular about waking up in pain, and the fact I had a cold and was worried about the anaesthetic.

I walked down to theatre, and the anaesthetist talked to me about my job whilst doing the cannula and giving me the meds, the pain was bearable. The next thing I'm waking up in recovery, not in pain at all, just drowsy and a very dry mouth.

I spent the next six hours in hospital, where I drank so much water and peppermint tea, had to pee so many times, which was difficult but ok. She would ask me my pain out of 10 and I'd say about 2, so really not bad compared to the pains I'd lived with since puberty.

A week later I'm starting to get a bit more mobile in terms of movement and the bloating/swelling is starting to settle. Hoping to go back to work next week.

[jcb12 in reply to Hunt1610]

Thank you, me too! Now just a case of waiting to see someone!

Makes me feel a lot more relaxed that when you came round you weren’t really in any pain, I’d rather be drowsy than in pain all day long!

Glad you’re getting movement back, hopefully you can get back to work and things start to improve! x

[Biokimistry]

Hello!

I'm 23 and was diagnosed via lap on Friday. Such a relief as I'd been in and out of GPs since I started my periods to try and get some relief. My biggest struggle was finding someone who would be willing to do any testing further than ultrasound as I was "too young" for any invasive testing, despite it affecting my every day life.

The best thing you can do is speak up for yourself; healthcare has gone from being a "sit and do as you're told" to a more open conversation. So ask questions, test their knowledge, and show them that you're not there to be messed about. I found crying in their office about how much it's affecting my life really pushed them into doing something. There's some really good resourses from endometriosis UK which you can fill out and take to your appointments to aid their investigations into endo.

With regards to pain, I have a reheatable wrap which you can strap on around your back/stomach to ease the pain and keep you on your feet if you need to. I not sure if you've tried this but you can take both ibuprofen and paracetamol together. This helped me along with a lucozade to get me semi-mobile out of fatigue.

Feel free to drop me a message if you need. I wish you all the best with everything! X

[jcb12 in reply to Biokimistry]

Hi!☺️

I kind of feel like that’s exactly what my problems been - I’m ‘too young’ even though there is a history of it.

I did get quite upset as it generally is having an impact on my life quite considerably, especially in the past few months. I did find some forms online and filled them out and I’ve kept a diary for the past 6 months of everything that happens, the areas of pain and what helps etc so that really helped.

I have a hot water bottle almost all the time and recent purchased these strips that reminded me of deep heat that seems to help and I take paracetamol and ibuprofen together - I would take codine but I had a reaction to it when I was younger.

Thank you so much for sharing x