Endometriosis

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Hey,

I am feeling desperate and looking for guidance. For the last 3 months, I’ve been in agony with stomach bloating, lower abdominal pain, sharp lower back pain, heavy/clotty periods, nausea + vomiting, and exhaustion. I’m constipated for a few days then have explosive dihorrea the next. TMI but during my cycle my dihorrea is awful and so irratic. Had bloods done in May which showed low folate so thought maybe this was contributing to my symptoms. My period all my life has usually been regular and to the day, but for the last 3 months it’s been completely irregular and out of sync. It’s starting to affect everyday life - all month round. My stomach is so distended for my entire cycle, worsening during my period. I feel so sick, minimal appetite and just so exhausted by all this. The pain in my lower back and stomach is unbearable - sometimes I feel like I’m going to pass out. I’ve also tested my urine on 2 separate occasions which has shown blood in my urine but as per usual - GP’s don’t care. This was done prior to period starting so understand this could have caused traces of bloods.

I took matters into my own hands and booked a private ultrasound which showed nothing. Have had routine bloods done at GP (I’m a nurse, and believe the blood tests they’ve taken aren’t appropriate for my symptoms) which also came back normal. I’ve contact the GP constantly and all the can offer me is a telephone consultation in 3 weeks. I’m at my wits end, I’m in so much pain and feel so miserable - does this sound like endometriosis? Every single month it’s getting worse :( I have a 3 year old too and it’s breaking my heart that I don’t have the energy to be able to give him my all at the moment.

Pain around my ovary, back pain, feeling like I had a UTI, bloating

@realslimshade my back pain is horrendous 🥹 bloating never ever goes down! I’m praying I get somebody to see me today. How are you feeling now? Did you have surgery?

I’m so sorry for this disgusting image 🥹 but I’ve noticed dark brown/black blood on my tampon (my period is on its last day). I’ve never once in my life had this colour of blood. I feel like I’m over analysing everything 🥹 have any of you ever experienced this?

I’m okay the minute, I had a long (8.5hr) surgery in May plus a mirena fitted

@realslimshade wow you’ve been through it 🥹 I’m so glad your stable now. Did you feel like you had to push the GP’s to be heard? Xx

I actually changed doctors and the new ones were very good, the second I had the ultrasound they said it was obvious I had endo and badly despite telling me they wouldn’t see on ultrasound!
I had huge amounts of endo excised and also bowel and bladder involvement and my appendix removed, all keyhole

@realslimshade you poor thing - what an awful time you had 🥹 I had ultrasound done and everything looked normal? So I’m at a loss as to what’s happening :(

That's perfectly normal, it's just that the bloods been there a while (makes sense that it's the last day of your period) and so it's more deoxygenated so is brown instead of red, it's normal and nothing to worry about.

Have you seen anyone at your surgery yet? If so what did they say?

I have endo stage 4 and adenomyosis. No idea how long it’s gone on for (have always had shit periods and a load of random symptoms and all of a sudden a worrying - to the doctor- cyst was felt) but needed an MRI not an ultrasound to diagnose

@TheLivelyViper okay thanks! Did another e consult today - got an email back saying a telephone appointment has been arranged for 15th of September 😫😫😫 I feel like they’re making me feel this is all in my head??

Ultrasounds are not particularly effective at identifying endometriosis - a laparoscopy remains the gold standard. I had an ultrasound 13 years ago where no endometriosis was found! A year later I was diagnosed with endometriosis via laparoscopy. 3 years later I was diagnosed with adenomyosis (MRI) and stage 4 endometriosis (another lap).

It is true that Endometriosis is a chronic illness, but it doesn’t necessarily start with your periods - some women develop it (or their symptoms worsen) later in life. It is possible you’ve developed it more recently, but I agree with pp that it would be sensible to rule out other conditions too. I’m in the process of being diagnosed for coeliac disease and had ignored horrendous gastro symptoms for years assuming it was all down to the bowel endo I’d already been diagnosed with! So it’s good to be thorough.

You need to really push for a referral to gynaecology. I waited 14 years for my diagnosis (I did suffer from the point my periods started, but this isn’t everybody’s experience). A decent gynaecologist will tell you that you need a laparoscopy to confirm diagnosis (on the basis that an ultrasound hasn’t been conclusive but you’re symptomatic). They might also order an MRI so they can try to get a better idea of what they are dealing with. The gynaecologist can excise (cut out) any endometriosis lesions they find with your agreement during the laparoscopy, as well as separate any adhesions. Some women find excision to be very helpful in reducing their symptoms, sometimes for a long time.

Keep pushing and don’t let them fob you off.

Finally, research all the treatment options thoroughly - there’s lots of suggestions in this thread but what works for one woman won’t for another. You might need to try a few things before you feel any relief. Hormonal treatments did nothing for me and I’ve tried in the double digits! - but have been fantastic for other women I know. If I could go back in time I’d have created a shortlist of the treatment options I wanted to try most and be ready with any questions I had about them for the follow up post surgery.

I’m sending lots of love and (gentle) hugs, it is a horrible, debilitating disease. You deserve to be listened to, you deserve to be taken seriously, and you deserve to be believed. What you’re experiencing isn’t normal. I’m here if you have any questions or need any support x

It is a really tough situation both for you ans GPs who are so busy, if there's any way of calling and seeing if they have any emergency slots, see about doing that instead. Is the call with a GP you know or like? If you call reception they'll be able to switch it to face-to-face I think (so I'd just call and plead for that if you can). Hopefully it's a productive appointment though.

Hi everybody 🫶

just wanted to share with you that I have tested positive for H pylori - I knew something wasn’t right! I feel validated and emotional knowing something wasn’t right. So upset with the GP’s and the way they’ve treated me but at least now I have a reason behind my symptoms.

i wanted to thank you all for your time, support and reassurance during all this. This really is such a wonderful space and I am so thankful for you all x

Have you seen the GP? Or gotten any next steps for a treatment plan? I've very glad they've found the cause, and at least now they can build a plan on what to do and you'll feel some relief soon.

Yes, almost identical to my symptoms, I've had endometriosis for 25 years.

It's ruined my life.

@TheLivelyViper unfortunately not. An arrogant and condescending AMP called me. She was extremely belittling - don’t think she realises I’ve a gastro nurse of 12 years. Tried to say I should’ve asked for a F2F app, then turned round and said actually you have 3 F2F apps in the next week. I corrected her, and have the screen shots to confirm they’re all telephone appointments.

she then said that I need to do their stool sample to ensure it’s accurate (more gas lighting) and asked if I’d taken omeprazole in the last 2 weeks as that can cause ‘a false positive’. She is incorrect again, it can lead to a false negative!

So now, I’ve to wait over a week for their stool sample to come back, and continue in agony everyday. She stated ‘we don’t want you to go ahead and take the antibiotics in case it’s a false positive as it will wreck your stomach’ again, fully aware about these things. I haven’t just made my symptoms up, can she not see the multiple enconsults I’ve done explaining symptoms? I’m absolutely appalled at her, the way she spoke to me was disgusting. As a nurse myself, I’d never speak to anybody the way she spoke to me. Once everything’s settled, I’ll be putting in a complaint. X

I’m so sorry. Women should not be in pain because of a natural bodily function. It’s unacceptable. It does sound like endometriosis. I’ve suffered with this for most of my adult life and it’s intolerable. You need to have an ultrasound, and a laparoscopy which will look for endometrial lesions in and possibly around your abdomen.
Endo can affect ovulation too.. you may have ovulation pain and you also may struggle to conceive. This is important and don’t feel that you are being unreasonable to demand that you get a diagnosis for this.
During an investigative laparoscopy, if they do find endometrial lesions they could laser them there and then which will make a huge difference to your pain.
Feel free to message me if you want to talk about this. Don’t suffer in silence, even if you need to go private for this. There are a lot of treatments that aren’t ideal but do help and once you know what is causing your pain you can make informed decisions based on what is right for you.

I had endo on my ovary and my bowel
I had regular periods I could set my watch by, they were excruciatingly painful for the first two days, I was bed ridden with lots of painkillers. until I went on the pill, it took away the pain and heaviness of the flow.
though I came off it to ttc, it prevented me from conceiving and possibly caused a pregnancy to end.

i had it removed and it was life changing, after 18 years my periods were no longer painful, I conceived myself.
periods were still regular. Not as heavy.

I'm glad you'll be putting in a complaint, you should. Give us an update once the results of your stool sample are back. Will you then be seeing a gastro consultant or registrar? Then you can finally get on with treatment.

@TheLivelyViper i will do 😊 I’ve no idea. Yet to be seen face to face. I hate complaining as some people have it so much harder. But the way they’re treating me is shocking and so upsetting.

Don't be, they need to speak to people respectfully and that makes it better for others as well. Either complain within the hospital or to the ICB.

Oh and push to be seen face to face next time, it makes things much easier. Hopefully this will be the end of your having to constantly push to be heard.

I’ve not read the full thread but just wanted to say that I have stage 4 endo which is everywhere in my abdomen, including my bowel. Until late last year, I had no symptoms at all, with regular and normal period. Then suddenly my periods became agony and heavy. So it is possible to have endo but no symptoms until later on in life (I’m late 30s).

I have had endometriosis since I was 13. Had numerous scans to be told there was nothing there, had a laparoscopy at 22 and found endometriosis all over everything. The cleaner as much of it out of me and I thankfully got pregnant that month. I had an emergency section with him and the surgeon told me if I wanted another baby then now was the best time as I had had no periods for 9 months so the endometriosis hadn't managed to grow back. I have gone on to have another 2 children one from clomid and the other from a laparoscopy when they took my appendix and cleaned out an infection of pelvic inflammatory disease that had taken over my left side and they cleared the endometriosis again. I am now 47 in pain all the time and I know that it is the endometriosis but because I'm not trying for a baby they do not care. Because I have fibromyalgia and now FND they just put the pain down to them and my periods being longer etc because I'm perimenopausal so I get nowhere.

Just to say you can still have endometriosis tissue grow without periods, new research has found that endometriosis tissue can produce its own oestrogen and progesterone, as well as its own steroids, so can grow whenever.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11720315/?
https://www.jci.org/articles/view/188787/version/1/high-res-pdf/render.pdf?

You can also still get excision surgery if you're not pregnant (I haven't got kids and never want to have them, but endo and other conditions have disabled me it doesn't mean they can refuse to treat me in various ways including surgery). Perhaps file a complaint with the ICB or PALS because it can give them a kick up the but.