Endometriosis & Adenomyosis discussion thread

[justheretoread99]

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.

Im in the same boat and it’s so soul destroying, so sending you love

I had a pelvic MRI about 6 years ago, didn’t show any abnormalities. Last year went to my GPs complaining of all the symptoms of endo that I feel no one is taking seriously. Referred me to the gynae. She looked through my notes and said “I want to send you for another MRI before we even discuss a laparoscopy”. & this was from the trusts consultant gynae.

I honestly felt gutted knowing that the MRI will probably be the same as the one 6 years ago and a massive waste of time. But please keep persevering with them. Hopefully we’ll both get a laparoscopy and answers soon x

 

[Ilando]

@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.

I was sent for 2 MRIs and an ultrasound before they’d refer me for surgery. So frustrating but worth fighting your corner x

 

[uberoblique]

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.

Definitely not. I had a clean MRI 2 days before surgery. My surgery was 4 hours long as I had endo to remove in my pelvis, bowel and diaphragm and my pelvis was “frozen” (gummed together with adhesions). My surgeon (one of the well known ones) was surprised about the MRI but said it happens.

I’d get a hold of the NICE guidelines for endometriosis as they do (from memory) recommend a diagnostic laparoscopy on the basis of unresolved symptoms.

 

[Magpierainbow]

Hi all stage 4 endo diagnosed at age 27 a few laparoscopies & diathermy back then was pressured to try zoladex but I just relied on pain management as I found any hormonal stuff makes me crazy in my youth I tried all the types of pill available but led to severe depression. Sometime later it migrated to small bowl (confirmed by miniature camera thingamummy I had to swallow boy did that hurt when "evacuated"). That & diverticulitis (mild) & coeliac disease has led to bowel issues, also have developed other autoimmune issues. I generally have endo bingo (all 3 holes bleed sorry can't think of better explanation). Stress always makes it worse. Currently endo & peri-menopause are having a massive fight. Was offered oopherectomy but declined as have bad healing times due to being on my own & sole carer for mum & rescue animals. If there's any questions or help for anyone in similar position that'd make it worthwhile for me. Best wishes to all here

ETA will scroll through properly at some point am very interested in latest procedures/ advice others have been given

 

[IndominusRex]

Has anyone else with stage 4 found a good remedy for rectal pain? Or tried pelvic physio? I’m at my wits end.

 

[Magpierainbow]

Has anyone else with stage 4 found a good remedy for rectal pain? Or tried pelvic physio? I’m at my wits end.

Are you able to have a warmish bath? Radox salts are good. Also sounds weird but has helped me, sitting on hot water bottle (or laying down with it pressed where I need it) it's a weird pain isn't it I'm lucky I don't get it all time but it can wake me up from deep sleep. I'm prescribed zapain as not supposed to take ibuprofen also use a tens machine when it's all over including bum I use 2, front & back, with the one at back as low as poss, sometimes under cheeks I'm not sure if you can still get tens on NHS?

ETA this radox product

https://www.superdrug.com/Toiletries/Washing-%26-Bathing/Bath-Salts,-Bombs-%26-Fizzes/Radox-Mineral-Therapy-Bath-Salts-Muscle-Soak-400g/p/518852?gclid=CjwKCAiA866PBhAYEiwANkIneIkXrX6ZgQK7zhYTY89vKio209WFu8tX3z4QeiNSFfHWBj0BQ6MW7xoCNjUQAvD_BwE&gclsrc=aw.ds

 

[IndominusRex]

Thanks I tend to sit on a heat pad which helps a little. I’ve not tried a tens machine. Will have a look for one!

 

[xcupcakex]

Has anyone else with stage 4 found a good remedy for rectal pain? Or tried pelvic physio? I’m at my wits end.

Totally understand you with the bum pain the painful lightening bum zaps and the painful bowel movements are the worst.

I was diagnosed with severe rectovaginal endo last year and my bowels seem to be the worst pain! Definitely hot baths and hot water bottles help. My husband bought me a YuYu hot water bottle, which is amazing as it wraps round!
Hope you find relief

 

[HammyMcHamFace]

I havent read this whole thread but I think I have endo and my GP keeps fobbing me off, so much so that I stopped going. My period lasts about 4-5 days but the lead up to it, I get really bad lower back pain and period pain. The day before I come on and the first day of my period is always the worst. Feels like my womb is gonna fall out. I went to the GP and spoke about this along with my very heavy periods & she told me to take pain for the pain and prescribed me with some pills to help my blood clot and reduce the flow which helps a bit but not massively. I stopped going the doctors in the end as I was just getting told the same thing but from a different gp. My mood before it comes is LOW, the pain is something else, it's like labour pain.

I also get pains in my bum? I dno, but I have IBS too. I know my triggers and avoid dairy n such. Sucker for a mcdonalds milkshake tho which is a killer

 

[xcupcakex]

I havent read this whole thread but I think I have endo and my GP keeps fobbing me off, so much so that I stopped going. My period lasts about 4-5 days but the lead up to it, I get really bad lower back pain and period pain. The day before I come on and the first day of my period is always the worst. Feels like my womb is gonna fall out. I went to the GP and spoke about this along with my very periods & she told me to take pain for the pain and prescribed me with some pills to help my blood clot and reduce the flow which helps a bit but not massively. I stopped going the doctors in the end as I was just getting told the same thing but from a different gp. My mood before it comes is LOW, the pain is something else, it's like labour pain.

Please don’t give up.. it took me 12 years (I’m 29) to be diagnosed and to be actually taken seriously. Keep on at your GP or request to see someone else.
Document as much as you can of your pain and symptoms (period app or something) and explain to your dr. Ask to be referred to see a endo specialist.

They should give you tests such as ultrasound and MRI but that doesn’t always show endo (mine didn’t). You can only be diagnosed by laparoscopy, although some scans can show evidence of endo. Good luck x

 

[loubylou50]

I havent read this whole thread but I think I have endo and my GP keeps fobbing me off, so much so that I stopped going. My period lasts about 4-5 days but the lead up to it, I get really bad lower back pain and period pain. The day before I come on and the first day of my period is always the worst. Feels like my womb is gonna fall out. I went to the GP and spoke about this along with my very heavy periods & she told me to take pain for the pain and prescribed me with some pills to help my blood clot and reduce the flow which helps a bit but not massively. I stopped going the doctors in the end as I was just getting told the same thing but from a different gp. My mood before it comes is LOW, the pain is something else, it's like labour pain.

I also get pains in my bum? I dno, but I have IBS too. I know my triggers and avoid dairy n such. Sucker for a mcdonalds milkshake tho which is a killer

I really feel for you, this sounds so similar to me. It took me 7 years to get diagnosis, and I’d experienced milder symptoms for years before that too. Unfortunately most people’s experience is that you will have to jump through a lot of hoops to get investigated thoroughly and the proper diagnosis and treatment. Along the way I had: 2x endoscopy, 2x colonoscopy, 1x cystoscopy, bowel MRI and various ultrasounds as no one would listen properly to my symptoms so I ended up going all round the houses and getting no results! Eventually I begged for a Gynae referral and even then all they wanted to do was give me the coil without investigating. However I’d had enough by then and knew I wanted a laparoscopy to get a diagnosis for sure, so I refused a coil and insisted on surgery. Eventually had it last year where they diagnosed endometriosis and adenomyosis, and removed areas of adhesions! It was a real ‘hallelujah’ moment when I came round from the anaesthetic and realised, finally I had an answer to all the years of pain!
So definitely do keep pushing, keep going back to your GP so it’s all documented. Write notes before you go in so that you don’t forget anything that you’ve been experiencing. Also meanwhile, I highly recommend getting a TENS machine to help with your pain, I got one from Amazon and really helps with a bad attack. Alongside strong pain relief!

 

[IndominusRex]

14 years here, ignore that doctor and persevere. It’s frustrating and you shouldn’t have to but you know your body best.

 

[M33L4]

Hi all, new to this thread. I’ve had endometriosis for as long as I can remember, I’ve had numerous laparoscopy’s and two ablations so far.
The last one was three years ago and it certainly helped with the heavy bleeding and severe pain. I’ve recently noticed the pain I usually get on my left hand side while menstruating is there constantly and I need to take more than an over the counter pain killer for it. The last few months the bleeding has intensified again.
I’m 45, I’ve been sterilised now after thankfully and successfully having children after a few years of trying for the youngest two, do I bother the gp with these changes? Could they be pre-menopause symptoms?
I’ve had the left side pain for 15 years now and they’ve never gotten to the bottom of it with scans or laparoscopies.

 

[lattenosugar]

Hi everyone,
I am new here. I’m sorry to hear about all your issues it sounds awful reading through these stories.
Has anyone ever been diagnosed with dysmenorrhea?
I had this as a teen, I would syncope on a period every month and wasn’t able to go school. I have endo symptoms also faint symptoms on the toilet, bloating, painful periods, back pain. Spasms. Etc x

 

[soymilk]

Hi everyone,
I am new here. I’m sorry to hear about all your issues it sounds awful reading through these stories.
Has anyone ever been diagnosed with dysmenorrhea?
I had this as a teen, I would syncope on a period every month and wasn’t able to go school. I have endo symptoms also faint symptoms on the toilet, bloating, painful periods, back pain. Spasms. Etc x

yeah, this was what they first diagnosed me with! I've tried every pill and pain relief they've ever given me - some are better than others but still it's not enough!

 

[Cariad]

I had dysmenorrhea as a teen , went on combined pill until I had my children ( had 3 children and 2 miscarriages) which seemed to help although still need to take ponstan ( mefenamic acid) during periods
however once I'd stopped the pill my dysmenorrhea unfortunately returned with avengance as well as v heavy periods yay!..so had to add tranexamic acid to the mix
finally was diagnosed with fibroids ( aged 42) and offered a hysterectomy as CT scan showed something suspicious on ovaries and my CA125 was raised, so didn't want to mess about
turns out I had widespread endometriosis in my pelvic organs / bowel which had gone undiagnosed for years ...hence all my symptoms
Sadly my GP didn't take my symptoms seriously early enough , so push for investigation/ diagnosis
I'm now pain free and don't miss my monthly cycle of agony and disruption to normal life

 

[Calmyourtitsdown]

Hi all
I’ve been following this thread for the past couple of weeks, after having a biopsy on a lump I found just below my caesarean scar.
The consultant who took the biopsy had looked at the ultrasound I had previously, and said his feeling was that this is endometriosis.
Having discovered this thread and done some research, I felt like this could be very possible.
It’s been almost 3 weeks since my biopsy, and I was told to expect results in 7-10 working days.
I happened to be in A&E yesterday, for suspected pneumonia. Whilst they’re having tests, the doctor looking after me found out the results of the biopsy. And informed that it was indeed endometriosis. My iron levels are also incredibly low. I know he’s only an A&E doctor, but he didn’t seem to fussed.
Having said that…. My GP all along has seemed completely uninterested. Unknowing that I already knew the results of my biopsy, the GP has given me a call. But I’ve been left a bit perplexed by it
Firstly he said that the lump is scar tissue and nothing to worry about. And then went on to explain what endometriosis is, without naming it. ‘Oh they did find some endometriosis there, have you ever been diagnosed with endometriosis before?’
I couldn’t believe what I was hearing, firstly he’s the GP here if he wanted to know if I already had a diagnosis he could look it up on his bloody computer (I work for the NHS, I know how it all works.!) and secondly; he seemed totally ok with that and said if my lump is still bothering me in a months time to give a call.
Now have I missed something?! Shouldn’t there be some kind of onward referral going on here?! Or am I wrong? The consultant at the hospital said I would get referred onto gynae once diagnosis was confirmed.
I don’t what do as my next move? Any advice would be greatly received

 

[IndominusRex]

@Calmyourtitsdown definitely ask for a referral. It’s worth researching if there’s a specific endo specialist/centre in your area and asking your GP to refer to them rather than just general gynae.

 

[Calmyourtitsdown]

@Calmyourtitsdown definitely ask for a referral. It’s worth researching if there’s a specific endo specialist/centre in your area and asking your GP to refer to them rather than just general gynae.

Thank you for your reply
I will look and see if there is any endometriosis specialists within my area. I’m still trying to get my head around why my GP just didn’t automatically go for a referral to gynae!

 

[Magpierainbow]

Hi all, new to this thread. I’ve had endometriosis for as long as I can remember, I’ve had numerous laparoscopy’s and two ablations so far.
The last one was three years ago and it certainly helped with the heavy bleeding and severe pain. I’ve recently noticed the pain I usually get on my left hand side while menstruating is there constantly and I need to take more than an over the counter pain killer for it. The last few months the bleeding has intensified again.
I’m 45, I’ve been sterilised now after thankfully and successfully having children after a few years of trying for the youngest two, do I bother the gp with these changes? Could they be pre-menopause symptoms?
I’ve had the left side pain for 15 years now and they’ve never gotten to the bottom of it with scans or laparoscopies.

Could it possibly be "chocolate cysts" has anyone else here experienced those?

CA125 was raised, so did

I'm lucky I have this monitored also my aunt passed from ovarian cancer. Was told once by my specialist some people can have endo everywhere but no pain symp etc & others just a small amount that hurts like hell.

Hi all
I’ve been following this thread for the past couple of weeks, after having a biopsy on a lump I found just below my caesarean scar.
The consultant who took the biopsy had looked at the ultrasound I had previously, and said his feeling was that this is endometriosis.
Having discovered this thread and done some research, I felt like this could be very possible.
It’s been almost 3 weeks since my biopsy, and I was told to expect results in 7-10 working days.
I happened to be in A&E yesterday, for suspected pneumonia. Whilst they’re having tests, the doctor looking after me found out the results of the biopsy. And informed that it was indeed endometriosis. My iron levels are also incredibly low. I know he’s only an A&E doctor, but he didn’t seem to fussed.
Having said that…. My GP all along has seemed completely uninterested. Unknowing that I already knew the results of my biopsy, the GP has given me a call. But I’ve been left a bit perplexed by it
Firstly he said that the lump is scar tissue and nothing to worry about. And then went on to explain what endometriosis is, without naming it. ‘Oh they did find some endometriosis there, have you ever been diagnosed with endometriosis before?’
I couldn’t believe what I was hearing, firstly he’s the GP here if he wanted to know if I already had a diagnosis he could look it up on his bloody computer (I work for the NHS, I know how it all works.!) and secondly; he seemed totally ok with that and said if my lump is still bothering me in a months time to give a call.
Now have I missed something?! Shouldn’t there be some kind of onward referral going on here?! Or am I wrong? The consultant at the hospital said I would get referred onto gynae once diagnosis was confirmed.
I don’t what do as my next move? Any advice would be greatly received

Push push push. My old gp when I was first diagnosed got the hump with me because I refused zoladex he told me "you can't come in here & keep asking for diathermy " wishing you luck & strength