New warrior trying to untangle the mess in my head

[YellowWarrior]

Hello, I’m a newly diagnosed warrior still trying to get my head around what I’ve been told!

Yesterday I had a laparoscopy which found severe endo on my pelvic cavity wall, rectum, sigmoid colon, and diaphragm, with also some spots on my right ovary. My bowel is sticking to my womb and I’ll most likely need to have part of my bowel removed.

None of my endo was removed during the laparoscopy due to its thickness so I’m now waiting on an MRI (6-8 week wait on the NHS) so my surgeons can make a plan.

So that’s me so far, Day 1 into this journey!

[Natspooch]

Thats shit ,hope your feeling ok , what were your symptoms if u dont mind me asking? X

[YellowWarrior in reply to Natspooch]

Indeed! Feeling my stitches in my belly button a bit today, just removed my dressings earlier which was like a mini stomach wax!

My only symptoms were very painful bowel movements just before, during and after my period and tiredness. No actual period issues at all, my periods only last 2 days and I have extremely light bleeding no pain x

[Natspooch in reply to YellowWarrior]

I see im trying to figure out whats happening with my own issues not sure as yet but my main issues are ibs similar mainly constipation and mucus but when i am on my period or ovulating i get severe rectal pain to the point i cant sit down and painful sex x

[YellowWarrior in reply to Natspooch]

Not that I am expert at all but based on my experience, it definitely sounds suspicious. I don’t have constipation, rather the other way but the mucus definitely and I also get rectum pain when having bowel movement and just after. Have you spoken with your GP about this yet? X

[Natspooch in reply to YellowWarrior]

Yeah luv had all sorts of tests and scans done just none in the right area im going back soon to discuss the mucus because its a fairly new symptom they just keep fobbing me off really xx

[YellowWarrior in reply to Natspooch]

That really sucks, I have been SO lucky that my GP referred me straight away to the women’s menstrual health department at the hospital. Stand firm, because I am not a regular endo patient in terms of symptoms but have it severely! X

[Natspooch in reply to YellowWarrior]

Thanks love i got reffered to gynaecologist but he didnt even examine me just fobbed me off with ibs x

[Fooofs91 in reply to Natspooch]

This is exactly what happened to me for 3 years discharged with Ibs you Are not alone xx

[Hidden]

Hello, That’s a lot to take in and adjust to, but you’ll find a lot of support here. I was diagnosed in 2015 and have found this forum to be really helpful.

Xxx

[YellowWarrior in reply to Hidden]

That’s good to hear, I’m trying to raise awareness because no one really knows about it so it’s nice to find somewhere I can talk about it without having to explain so much to begin with. How is yours doing now? Have you had surgeries to remove your endo? Xxx

[Hidden in reply to YellowWarrior]

I’ve had a couple of excision surgeries and then a hysterectomy (I also had adenomyosis). After the excision surgery I feel really well and ‘cured’ but unfortunately my endo is very keen on returning and tends to after about 10-12 months. I find eating certain foods and avoiding others helps by following an anti inflammatory diet. Xxx

[YellowWarrior in reply to Hidden]

That’s what I’m worried about I guess, the rate of return. I’ll be having a surgery where they’ll be removing part of my bowel that’s badly affected but I don’t really know how long it’ll be before it builds up again?

Oh and I’m massively researching diets and what to eat and not as I think it can help leaps and bounds! Xxx

[Hidden in reply to YellowWarrior]

I think the rate of reoccurrence is different for everyone, it can vary a lot. I think it helps if you can find a method of treatment that works for you to slow the progression of your endo. Some people do really well on Mirena or a contraceptive pill. I tried various things but the side effects meant they weren’t tolerable for me (I was bleeding every day and my mood was really low and felt rubbish). If you can find something that works for you that will really help. Diet wise I’m gluten free, very little dairy, try to avoid added sugars and not too much caffeine. Xxx

[1991A123]

Hi yellowwarrior,

Wow that's a lot of endo! You must be relieved that they have found a root to your problems.

Do you mind me asking if you had any chest problems in relation to the endo on your diaphragm? Did they find it in the same laparoscopy?

I hope you have a speedy recovery xxx

[YellowWarrior in reply to 1991A123]

Very relieved, although the whole no cure thing put a bit of a dampener on it.

Yeah I have difficulty breathing quite a lot, I’ve always described it to people as my diaphragm felt really weak and that it didn’t allow my lungs to expand fully to take in full breaths, so I almost constantly only shallow breathe, then sometimes to get a full lung I have to yawn to be able to get enough air in.

Then I also get shoulder pain on my right hand side for days at a time. They found all of it in my laparoscopy.

Have you been diagnosed?

[1991A123 in reply to YellowWarrior]

Aw gosh, you are a true endo warrior 💛

Nope, still waiting for my laprascopy, been waiting since April so hopefully before the end of the year I'll know!

For the last 4 months I've been having the chest pain your describing. Normally comes on around the time of my period. When I told my gp she looked at me like I've grown an extra head lol.

I also get awful period, sciatica pains etc... gets us all down so much doesn't it xx