How endo affects me...

[DAML8]

I have been asked ‘how endo affects me daily’ and ‘what other conditions i have that I think are linked to my endo’ .... it got me thinking and I wondered how it affects others and what other women might suffer from along with Endometriosis? Any input would be greatly appreciated. 💛

[Moon_maiden]

Not quite sure what info you’re after.

I was diagnosed with sleep apnoea last year, likely had it a long time, but the headaches got worse around the same time the other symptoms kicked off. That was another thing GP didn’t believe, even with results from a specialist machine I’d hired. I think the only thing he took from it was there were a lot of oxygen desaturations. He did do the referral though. There is a US ENT consultant that has considered links between the two.

I’ve been reading how some autoimmune diseases could be linked.

Had really bad skin infection many years ago. When I saw the consultant he asked about infections. There can be a link, can’t remember why, but it was something he checked during the lap to make sure there weren’t any signs.

[Lauramcg1]

I’m not sure if this is the type of thing you’re after but if not it’s a different take I suppose...

During my most recent Endo flare up my pain was constant but was completely unbearable every time I had to pee. At the time I was commuting to London every day (1hr30) and often there was no toilet available for the duration or the train was too full to be able to get to the toilet. Over time my need to urgently pee (because of the pain) started causing me a massive amount of anxiety (making the pain worse) to the point where I would be shaking the entire journey and doubled up in agony once I got there. Eventually I changed jobs because I couldn’t deal with the pain and anxiety thee journeywas causing me. It is still a daily struggle because the pain is still there and of course there are times when you can’t get to a toilet quickly (eg. stuck in traffic, overrunning meeting etc.) but thankfully it’s not a much of a struggle. I loved my previous job and would still be there if it wasn’t for the Endo pain.

[Noodle1984]

I have 15 chronic conditions. Endometriosis, adenomyosis, fibromyalgia, post concussion syndrome, NAFLD, GERD, anxiety, depression, fibroids, hashimotos, asthma, thrombocytosis, scleritis, IBS, and celiac disease. I’m also currently being tested for POTS. It’s a mixed bag for me lol. But I’ve been told that there’s a lot of overlap between Endo, ibs and fibro.

[Jackie990]

With my Endo I have several other issues as well. Lower back pain, tailbone pain, pelvic pain (of course), fatigue, amnesia, depression, anxiety and right sided pain. I also get pain down into my thighs at times & terrible bloating- bad enough to the point I can not wear jeans but have to settle with wearing stretchy pants. Also can not do a lot of the things I love to do like ride horses due to pain during & afterwards. My life has been crappy for the last 15 plus years because my drs can't figure out how to get rid of the pain. They're always telling me to get a hysterectomy and I'm not sure I'm ready for that. Big decision for a 35 year old thats not positive she's done having babies (if I can even get pregnant after 6 surgeries & tons of scarring).

[DAML8 in reply to Jackie990]

Everything you said you experience is exactly the same as me. I had a hysterectomy 4 yrs ago when i was 30 (due to adenomyosis and pcos) and it made no difference to my pain at all. Ive also had 5 (failed) surgeries. Now drs have said there’s nothing more they can do for me and i just have to learn to live with the pain!

[Ano2020 in reply to DAML8]

Hi Daml8

Did you also remove your ovaries or not.

I don’t understand how they say of toy get a full hysterectomy endo will go is this true. If not what if endo spreads to lungs kidneys heart.. other important organs any idea pls help I’m so anxious can’t wait to see my doctor next week 😰

[DAML8 in reply to Ano2020]

Hi Ano2020,

I had my ovaries removed a yr later. Having a hysterectomy made no difference to my endo and my pain at all. My endo has continued to spread and i have had 2 surgeries since my hysterectomy and they have found extensive endo both times. The hysterectomy removed/cured my adenomyosis and pcos but my endo continues to cause me daily pain. The hysterectomy stopped my bleeding (i suffered really heavy bleeding and bled everyother week for 10 years).

Sorry it’s not more positive. I know endo is very varied from person to person so even though it didn’t work for me, it may have worked for others?

x