Living with Endometriosis: Hi there, This... - Endometriosis UK

Endometriosis UK

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Living with Endometriosis

Artblue profile image
7 Replies

Hi there,

This is the first time I have ever reached out about my endo. I have had two laparoscopic surgeries and am awaiting a third currently, I have so far been described as treatment resistant as have had a few different tablets and have been prescribed Yasmin to take back to back to avoid cycles.

For the last few years I have experienced bleeding and pain almost every day, last year I was admitted to hospital in septic shock - the source was never discovered but shortly after a small 'mass or thickening' was identified. Since being in hospital I have suffered chronic fatigue, increased bleeding and pain. I'll be honest here, I don't really understand endo and have yet to have a doctor be able to confirm or to rule out that the fatigue and pain levels I'm experiencing are common with the condition. I am only just holding down a full time job, have no social life and unfortunately very little sex life. I have an incredibly supportive husband and my work place has been unbelievably supportive, but I have really struggled to explain my symptoms and to locate good information sources. I am on long term codiene to help with the pain, but that has its own set of problems. If anyone can suggest anything - I am struggling to live a normal life at the moment!

Thanks for reading

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Artblue
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7 Replies
Sagada profile image
Sagada

Please, look for a good Chinese medicine practitioner (certified with good reviews) who specialises in endo and fertility. For me only herbs and accupuncture started to make some change as any kind of contraception gave only a lot of troubles (that's a rare case though with endo, especially that I've stage 4). I'm off any hormones now, with herbs and accupuncture sessions planned with my cycle, anti-inflammatory diet and yoga. It's too soon to say that works 100% but I do feel better than when I used contraception.

Artblue profile image
Artblue in reply to Sagada

Hiya, thanks for your help! I did try Chinese medicine but the gua sha massage that I had with the acupuncture left me looking and feeling like I had been in a car accident. I am willing to try again though so I will look around for some good reviews.

Is there a particular anti inflammatory diet you have tried?

Thanks Again

Sagada profile image
Sagada in reply to Artblue

That's interesting - I have absolutely no problems after acupuncture, actually it is done so well, I usually fall asleep after 10 minutes, I'm so relaxed :)

About the non-inflammatory diet: there is plenty of information online. Here is just one example: medicalnewstoday.com/articl...

I don't follow it 100%, as e.g. giving up diary products for me as a complete 'no! no!', but I'm using almond milk for coffee instead of normal one, I'm trying to buy gluten-free products whenever I can, etc. I just try to minimize the 'bad' food and eat much more than I used to before the 'good' products. I also included propolis to my diet, as well as Omega oils, vitamin B, iron and so on. One step at the time :)

Artblue profile image
Artblue in reply to Sagada

Thank you, I am feeling more positive today. The anti inflammatory diet actually looks great! I'm vegan and had been trying to FODMAP. It helped a little but I like food too much to be as restrictive as that! I have also found a recommended Chinese medicine practitioner to try again.

😄

JJWoody profile image
JJWoody

Hi, how old are you? How long since all this started? Do you have kids? And finally, the surgeries you mentioned, were they to remove cysts or endo specifically?

Artblue profile image
Artblue in reply to JJWoody

Hiya,

Thanks for getting in touch. I am 28, this has been going on for about 10 years. The surgeries were to remove endo and I have no kids, nor have I ever tried to get pregnant.

Lynne_support profile image
Lynne_supportPartnerEndometriosis UK

Hello Artblue.

I'm sorry to see that you are struggling with your symptoms at the moment. If you want to find some information about endometriosis, please have a look at our website endometriosis-uk.org/inform.... The information pages cover a wide variety of topics and there are also some useful publications that you can download. I hope you find this helpful.

Best wishes

Lynne - Endometriosis UK

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