Endometriosis & Adenomyosis discussion thread

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I

Ilando

I’ve finally found a positive to having endometriosis for years… my side effects of giving birth are nothing to the pain of endo.

The midwife couldn’t believe how little fuss I was making over the bleeding and stitches- well, they are a minor irritation compared to what I usually go through every month.

Sending hugs to everyone who is struggling xxx
 
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justheretoread99

justheretoread99

I have my third gynaecologist appointment of this year in a couple of weeks with a female gynae
(after my previous male gynae laughed at me and argued with me and said I shouldn’t be concerned about endo as I now take the mini pill and don’t have a break).

I am going to demand a laparoscopy and will not leave the room until this gynae takes me seriously and arranges one. Does anyone have any tips on keeping their anger and emotions under control at an appointment. I’m usually so calm and chilled but I’m starting to lose patience.

I have every symptom of Endo which has lead to major anxiety and depression. Not to mention what feels like years of my life wasted after taking so much time off from school, college, work, so many plans and holidays I’ve cancelled due to unbearable periods, vomiting and pain.

Can’t afford to go private, almost at breaking point 💔
 
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I

Ilando

justheretoread99 said:
I have my third gynaecologist appointment of this year in a couple of weeks with a female gynae
(after my previous male gynae laughed at me and argued with me and said I shouldn’t be concerned about endo as I now take the mini pill and don’t have a break).

I am going to demand a laparoscopy and will not leave the room until this gynae takes me seriously and arranges one. Does anyone have any tips on keeping their anger and emotions under control at an appointment. I’m usually so calm and chilled but I’m starting to lose patience.

I have every symptom of Endo which has lead to major anxiety and depression. Not to mention what feels like years of my life wasted after taking so much time off from school, college, work, so many plans and holidays I’ve cancelled due to unbearable periods, vomiting and pain.

Can’t afford to go private, almost at breaking point 💔
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I have always found that keeping a written record of every symptom, disruption to every day life really helps and handing it to the doctor helps. The only word of caution I would mention is that I’ve had 3 laparoscopies and each time, my symptoms have returned worse than ever
 
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L

Lj1234

Hi everyone,
First time poster. I’m so glad I found this thread, I have been reading it and relate to everyone so much.

I am currently awaiting a gynae referral with suspected endo and adenomysosis. I have always struggled with heavy periods and clots, as well as other symptoms. I’ve previously been diagnosed with IBS, chronic fatigue syndrome, fibromyalgia and PCOS, amongst other things like asthma and chronic migraines. I feel like this endo diagnosis would very much explain a lot of these symptoms!

I went to my GP around 2 months ago with pelvic pain. I had a scan of ovaries which came back clear, and a kidney/bladder scan which was also clear. I ended up in A&e with the pain and blood in my urine as well as vomiting, and hot flushes, and was advised I needed to be referred to gynae for possible endo/adenomysosis. The doctor kindly told me this condition would be very difficult to manage which didn’t help! I also have flare ups of UTI type symptoms but there is never an infection. This flare up has started again today after a week or so break.

I’ve been waiting a few weeks now for my appointment and I know the waiting list will be huge so im debating on having a private consultation just so I can get the ball rolling as I can’t manage the pain how it is currently.

The point of this post is I really wanted to know if anyone else struggles with hair loss? And pain/exhaustion outside of their period. My next period is due in 11 days and I have severe pains today. I was also in my ‘fertile window’ last week and the pain was so bad that I was doubled over crying! The dr has given me the mefanamic acid until I see the consultant.

I would appreciate any advice you can give, this forum has been such an huge help just from reading!

Thank you.
 
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pinkypurr

pinkypurr

Yes i suffer all month round with pain and exhaustion. My tummy feels so stretched and sore and like its going to explode. Nothing feels comfortable no sitting position lying down or anything. I hate any thing touching my stomach.
I suffered with bad hair loss after my endo surgery. I take a hair skin and nails supplement now and it all grew back and is probably actually now nicer. WHen i look back at old photos im shocked at the thinness of my hair
im in my fertile window now and thats when the pulling type pain is the worst. im sorry youre suffering too
 
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Q

quietlyback

Hi all.. I’m wondering if anyone has had adhesions diagnosed via a pelvic mri scan and what they did for it? I’ve been told I have many adhesions, and I’m so nervous about how this is going to effect my fertility. Thanks in advance xx
 
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O

openbook1

quietlyback said:
Hi all.. I’m wondering if anyone has had adhesions diagnosed via a pelvic mri scan and what they did for it? I’ve been told I have many adhesions, and I’m so nervous about how this is going to effect my fertility. Thanks in advance xx
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Hey
I had an MRI a few years ago which indicated endo on my pelvis and posterior cul-de-sac (area between rectum and uterus). I was referred to an endometriosis specialist (very important) who specialised in excision surgery (again, v important). Excision is the gold standard to remove endo, not ablation which can cause more problems than solve.
I had a lap (to formally diagnose) and excision (to remove) at the same time last summer with the specialist. I have been pain free since. None of it was on my reproductive organs. The plan post surgery was to stay on Depo Provera to try and stall regrowth as sadly endo will always grow back. Staying on Depo, I could have up to 11 years pain free. If I come off, up to 8 years pain free. I will likely come off at some point to try and get pregnant and then go straight back on it after having a baby.
It is so important to get in with an Endo specialist as they are trained on a whole other level on how to spot endo and remove it compared to regular gynes who can make things worse.
Any questions let me know xx
 
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B

Bgr101

openbook1 said:
Hey
I had an MRI a few years ago which indicated endo on my pelvis and posterior cul-de-sac (area between rectum and uterus). I was referred to an endometriosis specialist (very important) who specialised in excision surgery (again, v important). Excision is the gold standard to remove endo, not ablation which can cause more problems than solve.
I had a lap (to formally diagnose) and excision (to remove) at the same time last summer with the specialist. I have been pain free since. None of it was on my reproductive organs. The plan post surgery was to stay on Depo Provera to try and stall regrowth as sadly endo will always grow back. Staying on Depo, I could have up to 11 years pain free. If I come off, up to 8 years pain free. I will likely come off at some point to try and get pregnant and then go straight back on it after having a baby.
It is so important to get in with an Endo specialist as they are trained on a whole other level on how to spot endo and remove it compared to regular gynes who can make things worse.
Any questions let me know xx
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Did you go private for your MRI or how did you get one ?
 
justhavingamooch

justhavingamooch

My experience with endo was really weird. They basically didn’t know what was wrong with me initially because my symptoms were so atypical and endo wasn’t ever really discussed. It was only when they did keyhole to have a look that they figured it out. Endo was all on my kidneys triggering my surrounding nerves in really bizarre ways. I never had monthly pain or any typical symptoms, just this constant buzzing sensation in my groin, an occasional shocks of intense pain like when you hit a nerve and a few bad urinary tract infections with mild symptoms. Everything else was completely normal. Zero traditional symptoms. Then as soon as it was out, literally the same day, all the symptoms vanished. And I’ve not had any issues since, this was back in 2013. It really left me feeling like they don’t actually have a clue about endo. I only kept going to the gynae about it because I was worried I had skin cancer or something and was super paranoid but I do wonder how many women have it and don’t realise.
 
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S

standupsitdown

I had a laparoscopy and was diagnosed with endo right at the start of the pandemic. The surgeon came to my bedside when I was in recovery and showed me a bunch of photos and told me what he did, but my brain wasn’t in a fit state to take the info in and I have no clue what he said! So then the virus struck and my follow up app was cancelled, and I’m still none the wiser really. His secretary talked me through the report over the phone and told me about excision of adhesions but it was all a bit vague.

About a year later I conceived, and so this has distracted me but I guess I do need to follow it up for future reference. I don’t know if what he did assisted conception.


A study is being conducted on how COVID has affected ends sufferers so I’d urge any fellow sufferers who can spare 15 mins to do an anonymous survey to lend a hand. Thank you!

 
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O

openbook1

Bgr101 said:
Did you go private for your MRI or how did you get one ?
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I am in Canada. I did not go private. I told my Dr I wanted an MRI and she requested one for me.
Are you in the UK? I am from there and know healthcare is...not the best. If you are able to go private for one, I would as you will get in quicker. If not, you will likely have to be really pushy with your doctor as they seem to hate doing testing there. Well, that was my experience with them anyway. Never realised how bad the NHS was until I moved away and didn't have to beg for tests.
 
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B

Bgr101

openbook1 said:
I am in Canada. I did not go private. I told my Dr I wanted an MRI and she requested one for me.
Are you in the UK? I am from there and know healthcare is...not the best. If you are able to go private for one, I would as you will get in quicker. If not, you will likely have to be really pushy with your doctor as they seem to hate doing testing there. Well, that was my experience with them anyway. Never realised how bad the NHS was until I moved away and didn't have to beg for tests.
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Glad u got the help you needed. My symptoms arent as severe as others on here but i do have pelvic pain every day and a few other things going on down below. Id be interested to see what an MRI would show. I think id be too scared to get surgery. Im nearly 40 and probably wont be having any children so having surgery to conceive wouldnt really be needed. Would just like to see if my daily pain could be eased.
 
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Readread

Readread

I’ve got my ultrasound follow up after my lap however I will be on my period. Will that be an issue?
 
queenamber

queenamber

So happy to have found this thread. I've been suffering with pelvic pain since March, have been seeing a gynecologist (I'm in the US) and I still feel no further forward. I'm going back on Monday and demanding they look into it further. A lot of my symptoms seem to line up with endometriosis (also have lower back pain, pain in rectum, and IBS-like symptoms). It's battered my mental health this year (on top of everything else going on in the world!) and I feel like no one really understands the daily toll it takes on your mind and body.
 
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queenamber

queenamber

Hi everyone - reviving this thread because I'm at my wits end. I had an MRI a few weeks ago as my gynecologist is starting to suspect endo after 12+ months of chronic pelvic pain and ruling out various other things. I got a call from her today and she told me the MRI didn't find anything "abnormal". So now I feel even more lost, still in pain with no answers. Should I be demanding a laparoscopy or is endo basically ruled out from not finding anything on the MRI? Would be really grateful for any advice.
 
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I

IndominusRex

@queenamber hi there. Endo can only be definitively diagnosed by a lap! Adenomyosis and cysts tend to show up on MRI and sometimes Endo adhesions can be seen but it’s not enough to rule it out.
 
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