Just wondering

[Nemofudge]

Hey,

So I recently had it confirmed that I've been suffering from Endo for a good few years now after a year of tests ending in my laparoscopy just over a month ago. Didn't know if anyone has anything similar happening to them.

My immune system is awful. The past few years, I've been ill so many times. It's never just a cold, and I pick them up so easily, being sick for weeks/ months on end, and I've heard this may be connected?

They went in with the surgery in 3 places including my belly button, which still hasn't fully healed after about 7 weeks, where as the other two are fine. It's still sore sometimes, and leaks a regularly 🤢 is this just me, or is the recovery time normally this long?

The pain is still excruciating sometimes. They've put me on the constant pill, but I've had a few break throughs lasting about a week each, in which they're pretty heavy (i mean having to change hourly kinda heavy), and the pain is as bad as normal. I think I'm just scared that even though they removed it all I'm the surgery, it's coming back already. It completely covered most of my insides except my ovaries and tubes.

Last bits a bit graphic, and more of a complaint, but I get so much pain the day after sex it's almost not worth it. Is this just me? It's the normal, crappy, cramp pain in my back, abdomen and thighs.

I don't really know what I'm looking for, but I guess it's just be nice to know I'm not alone in this?

Gem

[Hidden]

Gem, you are not on your own!! I suspect that most of us have read your post and sighed in recognition. It's a sh*t disease. I totally relate, especially what you've written about your immune system. Seems that 'normal' people can catch a cold, dose up on Lemsip and still carry on with their day. Me? A cold knocks me off my feet where I'm laid up in bed for a good week. Hell I've tried all the multi-vits, early nights, zillions of diets but my battered immune system is still so vulnerable. About time the powers that be pulled their fingers out and researched this disease with vigour. Anyway....apologies for the rant Gem 😭. There IS hope however. I had surgical excision a month ago and the results are pretty astounding...I can have sex now WITHOUT pain. And my periods are painfree. Did you have excision or ablation/lasering? Makes a big difference. Did a specialist perform the op? Not just a general gynaecologist? I had one of the countries leading excision surgeons do mine and I have been given my life back. Sounds like your op hasn't really improved your symptoms: outcomes of endo removal depend heavily on the skill of the surgeon. I agree it's early days for you still but I've had no endo pain since surgery a month ago and I've been having sex every couple of days. I know everyone heals at different rates, however, back in October I had a diagnostic lap. They told me they'd 'fixed' a few problems and removed cysts etc. Although they found Endo they said they'd 'sorted' it. For the first month I had pain but thought it was healing. By six weeks post op I was just as sore as before the operation and I had a gut feeling that something wasn't right. My hunch was right- I went back under the knife in February and I was riddled with Endo- the first lap seemed to have aggravated it. Go with your gut. See how the next few weeks go but if the pain is persisting then go back for another consultation, you may need another surgery but boy is it worth it! Xxx

[Nemofudge in reply to Hidden]

I'm so glad it's not just me! It's not like me to get ill, but these past few years I've gone a month, 2 at the longest, without being ill at all, so I'm incredibly happy to know there's a reason behind it! Don't apologise, I'm glad I'm not alone!

I had a laparoscopy, and they ended up lasering, was just a general gynae, since it was supposed to be the final check to confirm I had it because of course bloods/scans etc showed nothing.

That's good to know, I'm sorry it took you a few surgeries to sort it. I knew it wouldn't be immediately all better, but I had hope the pain would subside a little you know? Having period pains, when I shouldn't be having a period at all, combined with pain the day after sex just left me wondering if I need to go back. I don't know how longs an appropriate time to go back without being shunned off and them telling me 'it's still healing' or 'you have to give the pill a chance to work' because I'm sick of those phrases. Plus, I don't want to go back under the knife unless I absolutely have to because it was kind of harrowing, I don't agree with anaesthetic apparently 😭

[Hidden in reply to Nemofudge]

Same! I had a reaction to the anaesthetic but even with that I'd go straight back for excision if I needed to. Ok....alarm bells have rung. General gyn? Lasering? Hmm. Search on this site- things like 'lasering pain returning'. Burning it off just skims the surface: it needs digging out. I see your quandry though, I bet the gynaecologist is quick to tell you to 'give it time' etc. Bullsh*t. Google BSGE Endometriosis centres in your area and make a private appointment. It'll cost about two hundred quid and he/she can put you onto the NHS waiting list for excision. You can't carry on like that long term bless you. I was baffled for years why I was ALWAYS ill- I'd have, say the flu, then a month later I'd get a virus. Winter is always worse. Geez I had loads of time off work (I'm a theatre nurse) and got put on disciplinary...basically colleagues couldn't believe I got genuinely ill so much!!! There's a HUGE link between endo and immunity and lots of folk class it as an autoimmune disease. Google 'immune system and endometriosis', you'll be amazed...that was my eureka moment. Makes sense I guess- our bodies are fighting so hard to destroy the endo that it can't fend off other bugs. Makes sense why we get so damn knackered too. I'm sure lots of ladies will post with their battle stories but honestly have a think about Endo excision. Even if you leave it a few months and then pursue it- your life's too precious for it to be spent on the settee with a hot water bottle. Hugs xxxx

[Hidden]

You're not alone, I get pain after deep penetration that lasts 4 days after, I bleed too now. Before gynae exams I try to take a painkiller, can you do that before sex?

Most painkillers are only effective before the pain starts.

I put a heating pad on my mid back and on my abdomen with my legs apart afterwards, that way it releases my pelvic floor so I have less pain from that as well.

As for the cuts, I would see your GP for infection.

Have you been checked for adenomyosis? It's harder to diagnose then endo.

I've had a breakthrough bleed for 3 weeks even though I take progesterone constantly, it was moderate to heavy but nothing like my actual flow (1 tampon every 15 min). Idk about you but I've developed an allergy to disposable pads, it first started out with irritation but progesterone seemed to have kick started so I switched to cloth, could you maybe try that? It helps some people with heavy flows, it hasn't done anything for me but the itchiness and that 'wet' feeling went away.

If you're on the progesterone only pill take 2 or 1 1/2 instead, it's actually recommended to take 3 pills in total for endometriosis treatment adding 1/2 a pill a week, so it isn't dangerous. It helped me since I had constant pain till I took 1 1/2, them I had to go back to 1 b/c of the bleeding, I'm seeing my gyno this week about it.

After my first period I developed numerous allergies and I was only 8! I'm now allergic to nuts, peanuts, latex, polymer, avocado, kiwi, and aloe Vera. Things I never had issues with before, my GP wouldn't refer me to an allergist because she thinks it's all endo related, so I've been trying to manage it with Benadryl.

I used to be prone to bad colds and strep but somehow drinking tea with 1 tbs of honey, 1 tsp ginger, sprinkle of cinnamon and garlic has helped me keep the symptoms at bay. My last one left me with chest inflamtion but I had no symptoms.