Endo , mirena or post covid issues? Any advice!

[Billielaurenxo]

Bit of a long one so please bare with me!

I finally got my first UK diagnosis in January 2022 - I was diagnosed in 2015 but that was when I was living in Cyprus and it was an emergency surgery due to internal bleeding from a ruptured cyst. So endometriosis wasn't really explored, she just told me after they had burnt it off.

I've suffered with mainly constipation since starting my periods at the age of 9. I was diagnosed with IBS and told that was causing my other symptoms too. I had ambulances called for me numerous times in secondary school due to ruptured cysts and excruciating pain. A number of different consultants, change of diet, medications, nothing helped.

In the past year my bowel movements have gone the other way and when I get the urge, I have to go! Occasionally there will be a lot of mucus. Anyway I had surgery 14th January 2022 under an endometriosis specialist in arrowe park. They confirmed endometriosis, effecting my bladder, ureter, pararectal space, uterosacral ligaments, ovaries, severe adhesions, etc. But he did say my bowel looks okay 🤯 I had the mirena fitted.

6 days after my surgery, I caught norovirus so that caused my body a lot of pain. Constant vomiting and diarrhoea after already being run down from surgery. The virus lasted just short of 3 days, then 5 days later I tested positive for covid. I didn't feel too bad with covid, except for being tired, loose stools and occasional vomiting.

I tested negative for covid after 9 days and for a few days I felt not too bad, then one day I woke up and I felt horrendous. Room spinning, nausea, vomiting, painful trapped wind, sweating, abdominal pains etc. And since then, it's been every day from about 5am, by 11am I feel okay, I just have no appetite and stick to water. It's what I imagine morning sickness to be like, along with frequent bowel movements. I have lost 18kg since my preop in December. I don't really eat at all, I try and just have a small meal in the evening but I avoid fibre completely because it makes me so much worse the next day!

I'm taking prochlorperazine and mebeverine but it doesn't seem to make a blind bit of difference. Doctors don't seem to know what's caused it and have referred me to gastro, though they just keep telling me it's more than likely just endometriosis.

I've read covid can cause gastro issues, the surgeon said my bowel looks normal so unsure if it's related to endometriosis, I've read the coil can cause issues, I've suffered heavy bleeding and pain since having it put in - I feel more endo pain now than prior to surgery! I'm so drained!

I'm just wondering if anyone has experience anything similar? What should I expect from gastro? I'm sick of not knowing and nothing helping!

If you made it this far - THANK YOU XXX

[BloomingMarvellous]

Wow, you’ve had a real hum dinger of a time . I can’t answer for you but surgery itself caused a lot of physical stress and changes to hormones for me which in turn creates chaos in the gut and vulnerability to infections. The gas itself really upset my pelvic area and ability to regulate everything.

Endo causes all manner of general inflammation and lack of oxygenation ; restricts good blood and lymph flow to the pelvis so it’s sensitive area all round. Sigh. Covid upsets alot of the adrenal and sex hormones and the oxidising intercellularly. So they are both disruptive in similar ways. Both causing congestion and lack of clearing toxins from the tissue. Hence more inflammation etc. Hence not sure how helpful it is to point at one issue alone as it is entangled and interrelated. We are a whole body not separate unconnected entity after all.

At one level it maybe tackling it from a single direction might help everything calm down ?

Getting on top of the wild levels of inflammation had to be a base line for me. Otherwise the rest wouldn’t help as it should and my body felt like it was in mass revolt. The road went down was nutraceuticals like Reservatoral, Omega 3 ( big time) milk thistle, chorella, NAC ( rebuilds gut lining as well as the effect on Endo itself) , Red Algae Magnesium ( helps with adenomyosis spasming that I get ) , plenty of veg and lots of water. Lots of veg soups with bone broth base. Castor oil packs weekly, Epsom salt footbaths ( sometimes in the early hours for pain and stiffness) Slowly, slowly catches the monkey on this one . I can’t do egg but can do most other stuff so have chia, flax, kefir natural yoghurt and homemade sourdough bread. After 8 weeks it’s calming down and off painkillers ( morphine, codeine, tramadol, paracetamol) and beginning to get better sleep for the first time in years. Am easing down the doses now as things are repairing and knowing which are the keys and which are side shows. Everyone is so different.

I’ve a background in alternative health so was pretty confident to manage this process myself but you’ll want to check any of it out with a qualified practitioner and ensure there are contraindications with any meds. All of the nutraceuticals have good double blind evidence for endometriosis as well as fatigues caused by infection. Anything is worth getting the inflammation under better control and not giving any of it territory to implant in my book.

[Heloo85]

This probably seems a bit omg you ain’t taking it seriously, but have you tried a either pre or pro-biotic!?

It would appear that something is amiss with your bowel function! You probably should request a colonoscopy but I would try replacing the good bacteria in your bowel in the meantime!

Xx

[Billielaurenxo in reply to Heloo85]

I take a probiotic every day for gut bacteria I think! Doesn't seem to be helping. I've had a referral to gastro so hoping for some answers then! Xxx

[EndoViking]

Hi, my word you have been through the wringer the last few months! I really hope you get the answers you need from hospital, I know you probably aren't feeling in a fighting frame of mind at present but I found you really have to advocate for yourself to get answers and treatment quickly. That said your body has been through so much it will still be trying to settle itself. It's difficult to advise you as we all have different experiences and with the mix od norovirus and covid it really is hard to say. I can tell you I had the mirena and although some people swear by it I found it did not help with my endo pain and gave me a whole host of other issues that made me feel horrendous, one of them being morning headaches that would clear after a few hours. For you it might not be mirena but is something you can keep an eye on. It can cause something called IIH, I've attached some symtoms it causes. But I would stress speak to your health team to discuss any possibilities for the issues you are having. I am so sorry you are having such an awful time, I hope you get the answers you need and that your body starts to heal. Sending you big hugs xxx

List of symptoms