Recently Diagnosed with Endo

[Hummingbird_97]

Hello! Over the past few months I’ve been getting progressively more ill but then getting better and repeating the cycle. In May I was hospitalised for a week but then released and at the beginning of the week I was asked to go to A&E by NHS24. A scan the next day concluded I have suspected Endo and I’ve been put on the pill until clinics open up again due to the current situ.

I’ve obviously been reading up on endo and how I can use different techniques to handle the pain and discomfort.

I’m wondering what you all recommend using/doing that helps you? And also at what point, when the pain is unbearable, do you go to a medical professional (gp, NHS24, A&E etc)?

I’m totally new to this and simply looking for some information on how to go forward.

🤗

[Moon_maiden]

Hi

It can be awful at times, I’ve avoided going to A&E on the basis I didn’t want any random op, more controlled. I eventually went private to see a gynaecologist at the end of last year, I was getting worse and nowhere at GP.

Have you had a referral? You should chase this up just in case it’s not been done. My area already has some appointments running, this could be on a certain basis. I am now through NHS, same consultant.

I found wheat bags can help, even though I know it’s more bowel orientated. I take Nefopam, paracetamol and was taking Naproxen, but stopped this recently in case it was causing irritation. Also having Zoladex, it doesn’t feel like it’s doing much, consultant seems to think it is.

Good luck, hope you don’t have to wait too long.

[Hummingbird_97 in reply to Moon_maiden]

Thank you! I have a referral for hospital in October which is quite a long time to wait. My GP was useless and offered me antibiotics for a UTI (which eventually made me call NHS24 and end up in A&E).

[hellounlocked]

Hi love! You made me remember my beginnings with endo and I shed a tear, I must say.

The first thing you must do is to find a hospital that has an Endometriosis Clinic (this means that you will be treated by specialist consultants and in case of an operation, there will be a multidisciplinary team looking after you, according to the nature of your case).

The second thing I would say is that when pain was very bad, I managed it with pain killers. I did this only in extreme pain occasions and the idea is to manage the pain in the future with life-style and nutrition changes (exercise, meditation, supplementation, diet, etc.).

Indeed, the third thing I would say is that you need to look at your diet. Favour foods and drinks that are anti-inflammatory as endometriosis (as most illnesses, including COVID-19) are inflammatory. If you haven't felt it yet, there is a possibility that you may experience bloating. The idea is that you start tackling it asap and to be consistent.

Finally, and this is a contentious issue, some people with endo take the pill and some don't. In my case, I have had endometrial growth while taking the pill and while not taking it so I decided not to take it long ago because I could see a lot of disadvantages and no endo improvement. But again, this is a disputed terrain.

And ahh, before I post this, you get pain cyclically because endo cells and stroma respond to oestrogen levels in your body. In other words, you may experience pain when your oestrogen levels are higher. But you may ask, how do I know about my hormone levels so that I can track my pain throughout the cycle? If you don't have an app that provides you with basic information about your cycle such as hormonal levels, please download one and use it actively

I wish you all the very best in this journey.

A big hug.

[Hummingbird_97 in reply to hellounlocked]

Thank you so much for your response!! I’ve been referred for a clinic appointment in October which is quite a long time to wait. I’ve been doing a lot of reading and processing how to adapt things in my lifestyle. The app idea I’ll definitely follow up.

😊