I don’t know what to do anymore

[Beth1002]

In need of some advice. I’m 24 years old been bounced from doctor to doctor and had a lap back in March and apparently was “clear from anything such as Endo” though pre op the doctor was confident it’s endo” I’m taking oramorph, tramadol daily but now I’m being told they don’t know what it is and I just have to live with it. Being referred to the pain management clinic, naturally this is something I do not want to. I know my body I know there’s something wrong I’m tired of feeling like I’m crazy. I’ve since had an MRI and was told there’s a 3cm cyst on my left ovary and waiting for an ultrasound. Ended up in A&E yesterday due to unbearable pain. All for the doctor to tell me there’s nothing they will do and discharged with without even giving me anything stronger.

I’ve now booked to see a private gynaecologist and gonna ask him if we can start from the beginning as I’m sure something was missed

[Hidden]

Hi Beth,Good for you for sticking up for yourself and getting and appointment with a gynaecologist! Hopefully, this is one with a specialty in endometriosis, ideally at a BSGE accredited endometriosis center. If not, ask the GP fro a referral to one, if you're interested to speak to someone with specialist experience in the area.

Endometriosis is hard. Like you, I ended up in A&E because of the pain. I've learned a few things that I can pass on to you that might help:

- At A&E, they can offer some pain management when they see you to get you into a state where you can communicate... but they specialise in immediate life-threatening matters. So...

- The GP can refer you to a BSGE accredited endometriosis centre to be seen by a specialist, who can talk to you about options around surgery

- Other things the GP can do....

- Prescribe simple hormonal treatment to try to help reduce pain (e.g. progestogen pill)

- Prescribe some pain management such as ani-inflammatories (e.g. Ibuprofen, diclofenac, Mefenamic acid, etc) and stomach protector (e.g. omeprazole)

- Prescribe pain management for neuropathic pain (e.g. Amitriptyline, duloxetine, gabapenten, etc). I think this is useful for adhesions.

- Prescribe pain management for flare ups (e.g. high pain around periods) with things such as cocodamol, etc. For short term use as well as laxative to reduce constipation

One of the crazy-making aspects is that all of this takes time. In my case, while waiting for appointments to talk about surgery, I've tried hormonal treatment & pain management to get through the days, reducing the pain. The things I'm taking have gone through a few itterations to find a "holding pattern" that will work well enough in the short term.

Also - when pain management isn't working, do go back to the GP and ask to try something else. They work through a process of trying to start patients on the lowest dose of the most common medication to help them. They will modify this if needed, but you have to ask.

I hope this helps a bit. 🌿🌼🌿

[CryBaby91]

Hi Beth, first I'm sorry you're struggling so much. You're certainly not crazy, this is not in your head and anyone suggesting it is needs a swift kick in their soft parts...see how they cope with the pain lol.

Right, is your private consultation with an endo specialist? Like June_viola said, if it's not an endo specialist you may have a disappointment again. If you Google BSGE registered endo clinics then you can find one in your area, and you get to pick who you see since you're the one paying. I also want to say how impressed I am that you've taken charge of your health and sought out private treatment! I stuck my head in the sand 3 years ago and stopped trying to get answers, I couldn't cope with being told that the tests were clear anymore. It just made me feel insane and like I was imagining everything. But, after a horrific year this year and some scary symptoms like blood in my urine I started pursuing it again. I'm 29 and now feel like if this had been dealt with years ago I may not be as poorly as I am now, I'm now concerned my bladder and colon are involved. Something I think may have been avoided if they had listened to me years ago! So please take a second and give yourself a serious pat on the back, you took charge and didn't take no for an answer, that takes some serious strength! Be proud of that.

Pain relief options go beyond tablets too, here is a few things I use;

•TENS machine, fab for distracting you from pain. Does not take it all away. But definitely takes the edge off.

•Hot water bottle, I have 2 lol a long one which is great for back pain! It stretches down my entire back and bum. One regular size one which is good for tummy pain.

•Heat pad. Similar to a heated blanket, you can plug it in and set the temperature and time. It's like a hot water bottle but no water fab for lower back pain! I lay down on it and it keeps my back pain manageable.

•Hot baths, these are super helpful if you have the energy!

•CBD oil. Make sure it is high quality, and speak to your GP first to make sure there are no medication interactions as it is not safe to use in combination with certain tablets. But I use CBD and it helps a little better than nothing.

•change of diet, certain foods can trigger endo so it is worth cutting things like dairy, alcohol, wheat and gluten and seeing if they have a positive effect on your symptoms.

I'm undiagnosed but after 9 years of pain I've started taking charge of my oen health, on top of regular painkillers I do all those things to make things more manageable. It doesn't take the pain all away, it is still there. But the edge comes off, I'm not crying as much anyway...so thats something.

Sending you lots of love! I hope things improve for you xxx

[Marcia71]

Without a diagnosis you will struggle to get to a bsge centre. But NICE guidelines say you should be seen by gynae with special interest in endo. And it’s your gps responsibility to make sure you are seen by the right person.