Endometriosis?

[Channy3]

Hi everyone

My journey is quite a lengthy one so I’ll attempt to shorten it by containing the most important info… when I was a teenager I had awfully painful, extremely heavy periods at times they would bring me to tears, this improved after having children but was still far from “normal” whatever that is!? I had one natural birth with my first then three c-section’s with my others. Following this I had things like pain & bleeding during and after sex, constant pain in my back and my legs… over the years it got worse, I had many scans etc in my mid to late twenties & I was diagnosed twice with adenomyosis, I also had a laparoscopy which also confirmed pelvic adhesions from previous surgeries but I was told there was no endo. A few years past and these symptoms persisted and I was advised at 31 to have a hysterectomy so that’s what I did, unfortunately it didn’t go to plan and I suffered catastrophic bleeding and ended up being rushed down to theatre to stop the bleed, I lost that much blood my organs began to shut down and I literally swelled up from the face down. I had to have many blood transfusions but luckily I survived, my uterus was sent off for pathology and it came bk all clear no adenomyosis so I’d been misdiagnosed twice by two different people! I was told I had a lot of adhesions, my uterus was stuck to my abdominal wall, they’d cut my bladder attempting to separate it from something else having to have a catheter for six weeks following the op, this was in 2016, to this day I still don’t know what caused the internal bleeding I was just glad to be alive. Now at 40 I’m crippled with pain from my adhesions, I have a cyst on my right ovary (I kept those, everything else was removed) which is causing me agro, my hormones are still working as I have pms symptoms every month with painful breasts and mood swings etc. I’ve been for yet another scan and awaiting on results but I’m not holding my breath for any accurate or definitive information as they are a little shite (in my opinion)… 🫣 I’ve recently had some bloods and I’m anaemic which I have been consistently on & off for many many years, I was on iron tablets which I was taken off when I moved doctors but I continued on vitaminB12 strong… I’ve got to have another blood test in two weeks, do u think I could have endo that hasn’t been diagnosed? I have all the symptoms of it. I feel at times that I’m losing the plot, I think I will be asking for another lap to check properly for endo by a specialist and to also detach the scar tissue that’s there for temporary relief… I take so much medication but still suffer pain & discomfort everyday. Any advice, thank u for taking the time to read my rant x

[Moon_maiden]

Hi

So sorry, that’s such a lot to go through. One thing I’m amazed at is they didn’t remove all the adhesions when they had the chance. It’s criminal they don’t do this when someone is having an op.

What scan did you have? You really need an MRI, ultrasound will be fairly useless.

Not sure what bloods you’re having but make sure they do hormone levels include Testosterone, vit D, magnesium. Ask for CA125, it’s a cancer test but sometimes Endo can elevate levels, it’s not foolproof though. They did mine once, but came back normal with loads of Endo found later.

You can get an op to remove adhesions, my last one was to check and remove, plus he removed the appendix. I can sit on a chair for a bit longer now. I still get pain though which maybe gastro can help with. If last surgeon was correct I didn’t have adhesions from previous surgery,4, there were only some round the liver, I think taking appendix helped.

[Channy3 in reply to Moon_maiden]

Thank u for responding, I don’t know why it wasn’t all removed during either of the surgeries!? The first with the lap he just didn’t bother and when I had the hysterectomy I’m assuming it was because the surgeon had enough difficulty removing my uterus & cervix… he probably just wanted to close me up quick but I suffered a catastrophic bleed and had to go bk to surgery anyway. I’ve had many scans transvaginal, abdominal ultrasound upper & pelvis… I’ve even had an MRI which detected the cyst on my right ovary x

[Moon_maiden in reply to Channy3]

If they left Endo when you had the hysterectomy it could be there, it does what it likes. Given they’ve left adhesions they probably thought a hysterectomy would make it all go away, unfortunately it’s an old view these days. I always request records to see what they written after an op. Yours should have loads of notes with what you went through.

If you have surgery make sure you get an agreement with the surgeon to get rid of all adhesions everywhere. I got last surgeon to sign my list of what I wanted 😂

I’ve not had much luck with scans either, they don’t like what we have 🤦‍♀️🤣

[Channy3 in reply to Moon_maiden]

I’ll go in armed with a book full of requests haha 😂… it’s a nightmare x

[Endosufferer1]

Yes, it's endo, you've got it all! Anemia is really bad with endo! Wouldn't be surprised if they find endo in your lungs (thoracic endo), you need to ask them to check your lungs (have you got issues with your lungs during periods)?

[Channy3 in reply to Endosufferer1]

Hey, I don’t have periods anymore due to having the hysterectomy in 2016, however I do suffer from breathlessness when I haven’t even exerted myself such as cleaning out the rabbit, vacuuming or walking up & down the stairs. I do often have a deep burning sensation throughout my pelvis right up to my upper abdomen that radiates into my back, I went to hospital twice in one week not so long back with really bad pain under my left rib cage… I was so scared I thought I was having a heart attack, the pain increased every time I took a breath in x

[Endosufferer1 in reply to Channy3]

That's thoracic endometriosis! You need to have a MRI of your thorax.

[Endosufferer1 in reply to Channy3]

Also try taking noni juice for three months as a cure each year. It really does help, especially for the lungs.

[Channy3 in reply to Endosufferer1]

I will, thank u x

[SJ0514]

So sorry to hear how you have suffered, sounds absolutely awful and terrifying! Mine sounds like a breeze in comparison to what you have been through- sending hugs xxx

[Channy3 in reply to SJ0514]

Not at all, we’re all fighting our own battles one day at a time xxx

[SarahK73]

Sorry to hear that.

I have had a varied journey, at the age of 35 had open bowel surgery to remove 30cm of my sygmoid colon removed. Following 5laprosopy procedures. Then haafurther 5 laparoscopic surgeries ending in a full hysterectomy staged 44. Then suffere compacted bowel and a month stay in hospital due to catastryinfections. Have been much healthier recently following a vegan diet n no alcohol for last 20 years and run 3km daily

Stay strong

[purplevelvet9]

So sorry to hear everything you’ve been thru. I don’t have any answers for you but wanted to come in and send my love 💜

[Channy3]

thank u so much xx