Does this sound like Endometriosis? Please help? Any experiences & advice hugely appreciated ❣

[Heartof3]

Hi everyone

This is my first post so please bare with me as i don't know where to start and feel like I'm going crazy with this pelvic pain 😖

Basically, i am 38 & sufferd with unexplained pelvic pain & the odd ovarian cyst on & off since i was 20.

My periods last a week and are not badly heavy . I do suffer pms mood swings , dizziness & tiredness though 😞

I had 3rd & last beautiful boy 4 years ago. Since the moment i gave birth i had to have blood transfusions & ended up in hospital for over a week after as i had sepsis caused by an endometrium infection. I have suffered with non stop awful pelvic pains since. I had a prolapse repare (rectocelle) 9 months ago & was hoping that my pain would get better but it hasn't.

My pelvic and back pains start at ovulation and can continue for weeks. It feels like i have pressure in my pelvis and lower back that's made worse by any activities. I can also get sharp burning pain in my groin/ ovary if i stand quickly. I get achey legs & hips and feel exhausted. I can not have sex as it's so uncomfortable . Sometimes i constantly feel like it's a UTI & other times it can feel like IBS. It's just a constant dull ache with pressure, like a balloon of deep dull pain being blown up in my womb .. the more i walk or carry things etc the more it expands with aching pain. I get awful bloating too. I had a cystoscopy which only revealed slight scaring in my urethra, all clear in my bladder. My last Scan showed a small cyst in my right ovary but I've had them on & off for years, they just cause a tugging/ sore pulling sensation.

Vaginal swabs reveal streb B.

Sometimes i get thrush.

I've triedcontraceptive pills which made me so hormonal & the coil caused pain 😞

I am currently seeing a physio as i have vaginal scaring & painful pelvic floor.

I am on the waiting list for an endoscopy so praying this will give me answers?

Has anyone been through similar? Does this sound like endometriosis? It's really getting me down, so any answers would be greatly appreciated.

Thank you so much in advance ❣😊

[lauramw]

Hi, sorry to hear of your pain and yes, it does sound as though it could be endometriosis. It can only be diagnosed with laparoscopy I believe. Once you have a diagnosis I would urge you to see an endometriosis specialist rather than a general gynaecologist- they do not understand the complexities of endometriosis. There are lots of special Centers across the country now. I have a lot of experience of endometriosis so if I can help, please ask. It is a condition that causes isolation and confusion. You are not going mad but I have felt that many times in my life as it is so hard to get doctors to listen and the pain is unbearable at times. I wish you all the very best and hope you can get a definitive diagnosis and treatment soon. Laura

[Heartof3 in reply to lauramw]

Hi Laura,

Thank you so much for your reply.

Yes you're so right, I'm forever confused by it. Plus i feel isolated because it's a silent pain that hardly anyone understands.

For awhile I didn't think it was endometriosis because my periods are regular & not very heavy, and I've been blessed to be able to have children.

But since having my 4 year old this pain has taken over my life & with everything else ruled out I'm i am now strongly thinking endometriosis.

If you don't mind Can i just ask a personal question.. is wind a symptom of endo?

It's not the typical trapped wind pain but when i have a flare i tend to get a lot of rumbling wind x

[lauramw in reply to Heartof3]

Hi

I don’t mind you asking at all! It’s good to talk about these things.

Yes, wind can be a symptom. I had endo on my bowel which manifested as IBS symptoms so a bit of wind and pain mostly around the time of a bowel movement. When I was first diagnosed they said my disease was mild and couldn’t understand why I was in so much pain. They ended up referring me to a gastroenterologist because they thought I must have Crohn’s. I think the symptoms of endo and some bowel diseases can be confused sometimes, but my diagnosis was 25 years ago, I would hope that things have moved along now and that you should be able to get a quicker and more definitive diagnosis.

Please let me know how you get on and if you want to ask anything else, please do.

Laura

[Heartof3 in reply to lauramw]

Aww Thank you so much. I wouldn't wish this on anyone but it's nice to know I'm not alone.. Thank god for this group aye!

I think alot of these sytoms can mimic eachother so it's so confusing.

I had prolapse surgery 9 months ago, my bowel had basically prolapsed into my vagina via birth & got worse overtime.. even this was a battle to get a proper diagnosis. The op definitely helped but these womb pains are evil & I'm constantly aware of them 😖 i think surgery to have s good MOT is the only option. Luckily I'm on the waiting list but old covid will obviously make this along wait. So in the meantime i spose i have to educate myself on it.

I did read that you can have mild endo but severe pains, so it's definitely all guess work aye xx

[PenelopeClearwater]

Hi there

Just been reading your post and it sounds an awful lot like the symptoms I experienced for about 17 years. It runs in my family, so my sister had it too, for her, the pain wasn’t so bad, but the endometriosis showed up in scans and examinations. However, scans didn’t show anything in my case and my laparoscopy only showed very minor endo. When I finally spoke to an endo specialist, he told me that the pain is related to the nerves that are affected and can be excruciating and damaging even if there isn’t loads of endometriosis on view.

So basically, keep pushing the doctors to examine you properly and do not take no for an answer. Let’s face it - SOMETHING is causing you debilitating pain and you deserve to feel better, so even if it isn’t endo, they need to find out what it is.

I hope you get it sorted. Just sorry that you have a journey ahead. I do find it exhausting the amount of fighting we have to do to be taken seriously…

Sending lots of love x

[Heartof3 in reply to PenelopeClearwater]

Thank you so much for your message, it's been an eye opener that I'm not going mad.Luckily I'm on the waiting list for an endoscopy but beingthe NHS in covid times, I'm looking at a year i reckon.

Same as me, scans reveal nothing but the idd small cyst and scaring from my previous prolapse surgery.

As i look back through years unexplained pelvic pains, extreem tiredness & pms etc, endo is screaming out to me! I always thought endo was just bad periods but mines always around ovulation. jeeze theres so much more to it & i can relate to most.

Since the birth of my son 4 years ago, i have learnt that I'm suffering every day now & have to live my life to keep this pai at bay.

Xx

[PenelopeClearwater in reply to Heartof3]

It makes me angry that it is such an overlooked condition (even without covid)… but we deserve to be taken seriously and to be pain free.

I honestly don’t think I’d manage it all without being able to reach out to fellow endo sufferers, just to have that reassurance that I’m not going mad!

Keep talking about it and keep pushing those doctors! x