Advice/Experiences needed

[puddl0503]

Hello, I wondered if anyone could offer me some advice or their experience? or if anyone has endo and experiences many of the symptoms I have?

Last november, after 5 years of constant issues (pain & bleeding during intercourse, pressure and pain, bad periods and cramping, slightly odd bowel movements around periods etc *also worth noting all of this was happening while on different forms of contraception) i was referred for a laparoscopy which my results were negative for endometriosis, despite everyone telling me all my symptoms suggest endo. it’s also worth noting, i have no idea if the surgeon who did the surgery was endo specialist, it just says online that he had a interest in endo.

In december i decided to take matters into my own hands and come off my contraception which was the mirena coil, to see if certain symptoms were masked/made worse by it.

Since December i have experienced new symptoms which i am unsure if they suggest endo. When initially coming off the coil i had normal periods until around march when everything turned a bit odd. Firstly, my bowel movements are completely bizarre and i now have a fairly constant pain in my left side, around my hip - i have had external abdominal ultrasounds and everything looked normal. However, my calprotein levels and LGA (i think this is inflammation?) levels are quite high so due to this i’ve been booked in for a colonoscopy. I have found my bowel pains get worse around ovulation and my period so unsure if this is related.

I have since had very regular periods however before my period i will get an extremely dead left leg, pain up my back on my left side, (tmi incoming, apologies) i will spot brown blood for a few days (very inconsistent) then bleed very heavily for a day with large clots, stop completely and then ill have brown spotting again for a few days and then i will go back to having a very light period for a day but it’s only enough that i can see when i wipe. my period pains are so bad that the best way i can describe it is my body is trying really hard to bleed but it can’t? while this is all happening, the pain in my left side (around hip/back area) hurts quite bad like a very heavy cramping as well as my pelvis just tends to ache a lot.

I have been back to the doctor who said all of my symptoms align with endo but gyno will refuse to see me until other things have been ruled out.

I am going for a colonoscopy to rule anything bowel related out. Has anyone experienced this before?

Apologies again for the tmi and the rambling! any advice or info would be greatly appreciated

[Whoosh451]

Hello,

I’m sorry to hear about your symptoms, they sadly sound very familiar. It could point to adenomyosis which often gets missed by a non specialist during a laparoscopy. An mri could show up if you have adeno in the muscles of your uterus, it can cause bleeding and pain during/after intercourse, clotting and unusual bleeding during your cycle and the kind of pain you’re describing.

I have a similar experience of feeling like my body is trying to bleed and can’t and I have interpreted that as the inflammation caused by my adenomyosis during a period- kind of like a super heavy swelling and throbbing that doesn’t go anywhere! I always feel like if the bleeding matched the pain I’d understand, but they don’t line up!

As well as the colonoscopy, it would be good if your gp could refer you for an abominable mri to see if the adenomyosis shows up on the scan.

Good luck and I hope things improve with a diagnosis!

X

[Whoosh451 in reply to Whoosh451]

*abdominal spelling correction

[puddl0503 in reply to Whoosh451]

Hello! Thank you so much for your reply, I will definitely get on that and it’s interesting to hear someone say the same thing/understand what i mean as whenever i explain it to people they look at me baffled!

I also sometimes get a throbbing/aching sensation in my lower abdomen - i don’t suppose this is something you also get?

[Bakewey]

how old are you? Age may be having an impact…

Hope you get some answers soon.

[puddl0503 in reply to Bakewey]

Hi, I am 23 - i have been suffering with some of these symptoms since i was 15.

And thank you! it’s a pain it all takes forever to be seen

[BooksBooksBooks]

Hey. I have no advice I’m afraid (I’m equally lost myself!) but reading your post reminded me so much of my own experience and I just wanted to encourage you. Having such a frustrating lack of knowledge what’s going on in my own body, the horrendous (not to much inconsistent) bowel symptoms and strange bleeding and pain are all things I experience almost daily. I’m so sorry you’re going through this. I have felt dismissed for so long and am still waiting for answers. Just don’t give up and keep advocating for yourself. I mean, I say that like I’m great at it, which I’m definitely not! I just want to say that I can empathise and wanted to wish you all the best with everything. I really hope the system changes and women are taken more seriously and listened to.

[puddl0503 in reply to BooksBooksBooks]

Hello! Thank you for your reply, i’m sending you lots of love and courage because it’s such a frustrating and worrying process!

The thing that really annoys me when trying to get doctors to listen is rather than refer you for all possible tests, they do one thing at a time and then if it’s clear refer you back but then nobody follows up? i feel like im famous at the doctors as im always bloody calling up 😭

Always here if you need anyone and keep persisting - no matter how annoying it is, knowing what is happening with your body is so important so never back down ❤️