Endometriosis & Adenomyosis discussion thread

[soymilk]

Hi all,

I hope you don’t mind me jumping in on this thread - I’m looking for some thoughts from others with endo/adeno.

I’ve had bad periods (painful and heavy) for as long as I’ve had periods. They’re painful the whole way through but usually around day 4 they become unbearable and I pass out if I don’t take some extra strong pain. Over the past year or two I’ve also had bleeding in between periods - sometimes light, sometimes quite heavy.

I’ve been to my gp and they said it could be endo, so they sent me for an ultrasound and an internal scan which came back ok, so I was going to drop it but I’ve heard other people mention that endo is always picked up on scans so now I’m still wondering.

Essentially I’m wondering whether I should push for further tests given that I’ve had a clear scan - I’m worried that it’ll all turn out to be nothing and they’ll just tell me I’m being dramatic/really bad at dealing with pain and I’ll have wasted everyone’s time. Has anyone had experience of being diagnosed after a clear scan?

do you get any other pains/symptoms when you're not on your period? if you don't, you might not have it, you might just suffer from v painful periods but if it's bothering you and it's causing you a lot of discomfort etc I would be persistent! I had a few scans show nothing, other than follicular cysts but I had almost every gyno I saw tell me it was endo!

 

[Pacho]

I had no other pain other than when I was on my period where I would also pass out from pain. I have had more ultrasounds and transvaginal scans than most people have put together. Endo does not show on these. The only way to diagnose is a laparoscopy. There is a blood test called CA125. This is for cervical cancer but people with endo have been shown to have elevated levels of this (but not in the hundreds like cervical cancer) this can be used as a marker for endo. See if your doctor will run this, if it

Hi all,

I hope you don’t mind me jumping in on this thread - I’m looking for some thoughts from others with endo/adeno.

I’ve had bad periods (painful and heavy) for as long as I’ve had periods. They’re painful the whole way through but usually around day 4 they become unbearable and I pass out if I don’t take some extra strong pain. Over the past year or two I’ve also had bleeding in between periods - sometimes light, sometimes quite heavy.

I’ve been to my gp and they said it could be endo, so they sent me for an ultrasound and an internal scan which came back ok, so I was going to drop it but I’ve heard other people mention that endo is always picked up on scans so now I’m still wondering.

Essentially I’m wondering whether I should push for further tests given that I’ve had a clear scan - I’m worried that it’ll all turn out to be nothing and they’ll just tell me I’m being dramatic/really bad at dealing with pain and I’ll have wasted everyone’s time. Has anyone had experience of being diagnosed after a clear scan?

I had no pain other than when I was on my period where I would also pass out from pain. I was 12 years trying to get diagnosed even though my mother and 2 of her sisters have it. One aunt has it so bad it was all over her lungs too.

I have had more ultrasounds and transvaginal scans than most people have put together. Endo does NOT show on these. The only way to diagnose is a laparoscopy. Eventually when I paid private and met with a gyne he told me periods should never be painful. Yes you can have cramps but there is something wrong if you are in severe pain. Sure enough when he went in I had endometriosis everywhere. 2 rounds of IVF later I'm currently pregnant with my miracle baby

There is a blood test called CA125. This is for cervical cancer but people with endo have been shown to have elevated levels of this (but not in the hundreds like cervical cancer) this can be used as a marker for endo. See if your doctor will run this, if it comes back elevated the only way to know for sure if you have endo is to push for a laparoscopy.

 

[loubylou50]

Hi all,

I hope you don’t mind me jumping in on this thread - I’m looking for some thoughts from others with endo/adeno.

I’ve had bad periods (painful and heavy) for as long as I’ve had periods. They’re painful the whole way through but usually around day 4 they become unbearable and I pass out if I don’t take some extra strong pain. Over the past year or two I’ve also had bleeding in between periods - sometimes light, sometimes quite heavy.

I’ve been to my gp and they said it could be endo, so they sent me for an ultrasound and an internal scan which came back ok, so I was going to drop it but I’ve heard other people mention that endo is always picked up on scans so now I’m still wondering.

Essentially I’m wondering whether I should push for further tests given that I’ve had a clear scan - I’m worried that it’ll all turn out to be nothing and they’ll just tell me I’m being dramatic/really bad at dealing with pain and I’ll have wasted everyone’s time. Has anyone had experience of being diagnosed after a clear scan?

Definitely keep pushing for further investigations if you feel that there is something like endometriosis underlying your pain.
I suffered worsening pain (and other symptoms) for years and years - all my scans were clear but I knew there must be a reason and that I wasn’t just imagining this crazy pain that was taking over my life. I had to virtually beg for a laparoscopy operation to investigate properly - and even on the very morning of operation, the (male ) consultant said that he didn’t expect to find anything! A few hours later, post op, I was diagnosed with both endo and adenomyosis and had had adhesions removed!
You know your body best, so listen to your gut instincts and don’t be fobbed off.

 

[Looboo]

Hi all - I’ve been referred to the hospital because it looks like I probably have endometriosis. Just wondered if anyone could say what I might expect at my first referral appointment? I don’t have a date yet but already a little anxious.

 

[b1tchinb0ld]

Hi all - I’ve been referred to the hospital because it looks like I probably have endometriosis. Just wondered if anyone could say what I might expect at my first referral appointment? I don’t have a date yet but already a little anxious.

Very normal to be anxious of the unknown, hopefully you get a few more answers but from personal experience I met with the specialist who happened to also be my surgeon (isn’t always the case) and we spoke about pain management (the minipill and very strong pain and nerve blockers ended up being what I went for) and then a diagnostic lap and then it will go from there. If you’re on Facebook the groups on there are very helpful and I found put me at ease when I have any questions that can’t wait for my specialist - just look up endometriosis uk/endo support

 

[Its_Me]

Very normal to be anxious of the unknown, hopefully you get a few more answers but from personal experience I met with the specialist who happened to also be my surgeon (isn’t always the case) and we spoke about pain management (the minipill and very strong pain and nerve blockers ended up being what I went for) and then a diagnostic lap and then it will go from there. If you’re on Facebook the groups on there are very helpful and I found put me at ease when I have any questions that can’t wait for my specialist - just look up endometriosis uk/endo support

It was pretty much the same for me but didn’t even discuss any other options it was just let’s do a laparoscopy and if I didn’t want it then other options would need to be considered. There was no physical examinations or anything, just a chat about my symptoms. I had the lap 6 weeks later (this was pre covid) and my specialist was also my surgeon.

Just as a warning, I took a while to recover from my first lap. Generally a small procedure but I had a lot removed and because of the location I found sitting in the car really uncomfortable and couldn’t drive to work for a month. Everyone will be different of course but that was my experience with it so I would say just be prepared if you end up having a lap that you might not be back to normal within 2 weeks like they say.

 

[Yesweknowyouhavekids]

I had adenomyosis and suffered painful extremely heavy periods for many years. I had a total hysterectomy two years ago and have a new lease of life
Any questions please feel free to ask

 

[Looboo]

I had adenomyosis and suffered painful extremely heavy periods for many years. I had a total hysterectomy two years ago and have a new lease of life
Any questions please feel free to ask

Amazingly I’d never heard of adenomyosis since finding this thread! Also I really like your username

 

[Yesweknowyouhavekids]

Amazingly I’d never heard of adenomyosis since finding this thread! Also I really like your username

It’s inspired by that hideous Fletcher pair

 

[Beige Mama]

I have just found out that my cesarean scar distended and it has endometriosis on it. Has anyone here been diagnosed with this and had treatment?

 

[Calmyourtitsdown]

I have just found out that my cesarean scar distended and it has endometriosis on it. Has anyone here been diagnosed with this and had treatment?

I think this is what I have, though I’m still waiting to be seen by Gynaecology.

I felt a lump just below my caesarean scar a year ago, gp was convinced it was scar tissue. But it was causing me pain, so I pushed for investigation. An ultrasound and a biopsy later; the lump was diagnosed as an endometrioma.
The consultant who performed my biopsy, was the first one to mention Endometriosis. In fact he was dead on certain, after seeing my ultrasound and taking a brief history.
It was like a penny dropping moment; years and years of what I thought was ‘normal’ was indeed not.
I don’t know if I have any more endometriomas, but an ultrasound didn’t show anything (I know that’s not as accurate as other procedures)

A few months ago; I had a internal ultrasound and another external. The external showed endmetrioma is within my perineal, and just under a the layer of fat; hence why I can physically feel it.

It has tripled in size over this past year. I’m keen to seen gynae ASAP, as I feel thus far it’s only just scratching the surface.

I’m in excruciating pain.

 

[Pacho]

Oh God ladies this is awful. I'm a FTM with my little IVF miracle, due for section in Jan. I will definitely bring this up with my midwife next week. That's terrifying I wonder how common it is.. they are using my laparoscopy scar for the section

 

[Beige Mama]

Oh God ladies this is awful. I'm a FTM with my little IVF miracle, due for section in Jan. I will definitely bring this up with my midwife next week. That's terrifying I wonder how common it is.. they are using my laparoscopy scar for the section

From what I have read it is rare but not impossible. So long odds. I had no idea then last month I had 2 periods within 18 days so went to the doctor. Has an internal ultrasound and they saw it. Don’t fear a c section but check the scar and if your cycle and flow changes for any reason see your Doctor xx

 

[Autumncolors]

I had adenomyosis and suffered painful extremely heavy periods for many years. I had a total hysterectomy two years ago and have a new lease of life
Any questions please feel free to ask

Same. I got a hysterectomy 4 years ago. It took me a few months before feeling ready and planning the surgery. This was the best decision of my life.

 

[queenamber]

I had adenomyosis and suffered painful extremely heavy periods for many years. I had a total hysterectomy two years ago and have a new lease of life
Any questions please feel free to ask

I've been diagnosed with this recently. Did you have pain in between periods? I'm starting to seriously consider a hysterectomy because I don't know much longer I can deal with these symptoms

 

[Autumncolors]

I've been diagnosed with this recently. Did you have pain in between periods? I'm starting to seriously consider a hysterectomy because I don't know much longer I can deal with these symptoms

Yes. When I was a teen I only suffered during my periods then during and after, then a few day before etc. Eventually I was in pain every day.

 

[Yesweknowyouhavekids]

I've been diagnosed with this recently. Did you have pain in between periods? I'm starting to seriously consider a hysterectomy because I don't know much longer I can deal with these symptoms

Yes I had horrendous ibs and lower back pain sciatica and nausea

 

[bongsandstuff]

Yes I had horrendous ibs and lower back pain sciatica and nausea

I have such bad digestive/bowel issues! I was ‘diagnosed’ this summer with adenomyosis based on multiple ultrasounds giving clear indication that I have it. My stomach is swollen constantly and I’m living life looking like I’m 6 months pregnant every single day. Been suffering since I was 11 with painful heavy periods and have been chronically bloated for 3 years. It’s agony🥲 worst part is that I fought years for a diagnosis to be told I have it and nothing further. Got given a gynaecologist appt in July which is in January… the digestive side of things paired with agonising periods is honestly so debilitating

 

[IndominusRex]

I have such bad digestive/bowel issues! I was ‘diagnosed’ this summer with adenomyosis based on multiple ultrasounds giving clear indication that I have it. My stomach is swollen constantly and I’m living life looking like I’m 6 months pregnant every single day. Been suffering since I was 11 with painful heavy periods and have been chronically bloated for 3 years. It’s agony🥲 worst part is that I fought years for a diagnosis to be told I have it and nothing further. Got given a gynaecologist appt in July which is in January… the digestive side of things paired with agonising periods is honestly so debilitating

Honestly I think the bloating is the worst part of this disease! It makes it so hard even to just do something simple like get ready in the morning.

 

[loubylou50]

So interesting that you’re all mentioning digestive/IBS problems because I’ve suffered with those for years too! Never been sure whether they were linked to my endo, seems more than likely now though! It’s awful isn’t it, feels like there’s always a flare up of something or other going on.