Endometriosis & Adenomyosis discussion thread

[Inforapenny]

I demanded testing for ibs and things because nobody ever told me it could be endo related. So bad. Your story will be so so good to post. People need to know this stuff

So when I was taken to AandE last year they thought it was a case of food poisoning and then an appendices
And then I was on the bowel ward for a week. Plus the 15 years of issues.
Not one doctor, consultant, nurse asked about my ovulation or periods. If they had then perhaps my diagnosis would have been made sooner.
It's mind boggling. My medical history was screaming endometriosis but I got told oh its ibs, oh its uti, oh its in your head, it's your vaginal flora!
If only someone had joined up the dots.
Oh and don't get me started on the medical profession saying women and girls are embarrassed and that's why we don't get diagnosed.

 

[Inforapenny]

If you can spare 5 mins

SurveyOptic - Department of Health and Social Care

consultations.dhsc.gov.uk

I filled it in. Always makes me so upset to think that we have all suffered for ears and made to feel like we're moaning and being difficult

 

[Elisha97]

I’m quite late posting to this but earlier in the year I was finally diagnosed with severe endo after I first posted in here asking if people thought I had it. It was definitely worth pushing for in the end.

 

[Libbyaugust737]

I am so happy there's are thread for this. I had stave 4 endometriosis, severe Adenomyosis and suspected PCOS. Having recurrent miscarriage investigations so hoping they can day yes or no to PCOS.

I've had 2 laparoscopies and a year ago had a baby so had a year of little to no pain. Within a few months the pain was back with vengeance.

How does everyone handle pain? So happy this thread is here. I'm thinking of doing a blog but don't know if it would be worth it. Someone other than Lauryn Goodman needs to talk about it haha.

 

[Inforapenny]

Shooting in my bum until I nearly pass out is something I have when I am on my period and ovulating.

There is research coming out that suggests endo could be an auto immune disorder. Endo makes you incredibly inflammed so shooting pains anywhere in your body is possible.

If you are passing blood this is a sign you're unwell. The doctors need to up their game.
I would track ovulation and your periods and every day log symptoms. Make sure you log when you are tired/headaches/migraine/brain fog/log your sleep too.

I have bad UTIs ....some genuine some due to endo rubbing away my bladder nerves. However lots misunderstood and assumed to be bacterial. I've had several kidney Infections as a by product of endo in my bowel. It's difficult to link the 2 and it's only after endo was diagnosed did it all fall in to place. Apparently women with bladder endo are far more susceptible to bladder and thus kidney infections.
When I went for a kidney scan to check for stones it showed absolutely nothing
I was so ill with my last kidney Infection and I was aboard, it was awful.

I've written on here before but it took me to be taken in to hospital with suspected appendicitis and then a confirmed bowel infection to finally be taken seriously.

That's 15 years in the making.

I would push and push. I was lucky in a way as all the blood I pass I was given an emergency cancer check.
Ask for the works. Do not stop until you have ruled out all possible sinister stuff.
It sounds like endo but you need to force them to take you seriously x

 

[JoeBloggs]

Hi all! And thank you for starting this thread
I’ve been referred to the gynaecologist to investigate if I have endo. I’m 99% sure I’ve had it since being a teen.
I’m 27 and have been going to the GP’s and A&E since I was 14 with my symptoms.

My symptoms are: incredibly heavy and irregular periods, a mix of constipation and diarrhoea, pain in abdomen, lower back and thighs, painful sex, bleeding after sex, spotting, nausea and vomiting for hours on end whilst on my period, low moods, fatigue, hair on my lower back and constant uti’s.

I was referred back when I was 18 but it was an awful experience. It was my first time going and in the room was 2 male medical students which immediately made me uncomfortable. (I’d be totally fine with that now but at 18 it was very off putting) I told the gynaeo my symptoms and she just shook her head and accused me of making myself sick to lose weight. She then made me undress behind a curtain and told me to lay on the bed. She didn’t tell me what she was going to do and pulled out a huge metal speculum and said “I need to swab you for sexually transmitted infections”. The speculum was the most excruciating pain I’ve ever felt and burst into tears and couldn’t go through with it any longer. She shook her head and said “you really need your swabs doing”. She sent me for an MRI which came back clear and didn’t hear anything else again.
I later researched and read MRI scans can’t even pick up endo.

I’ve since managed my symptoms with the mini pill (continuous) and mentioned my symptoms in passing when I had my last pill check. A couple of appointments later and I’ve finally been referred back. I feel confident enough now that I’m almost 30 I won’t cry and I will demand a laparoscopy until I am blue in the face.
I am sorry for the essay and thank you if you are still reading, but my main questions are:

- Has anyone else had an experience like mine at 18?
- Will my next appointment be similar? Will they just want to swab me for sti’s?
- How long did it take you from initial referral to diagnosis?

Thank you and sending lots of love to you guys x

I’m so sorry you went through that. A number of years ago I had bleeding between periods, went to the gyno who insinuated that my husband of 7 years was probably cheating and it was an STI (it wasn’t). I was distraught and should have complained.

 

[IndominusRex]

I’ve just seen this on another group. So true!

 

[Ilando]

Also meant to add in my previous post. One of my most frequent symptoms of endometriosis is shoulder pain. Apparently something to do with the nerves being connected. Several GPs didn’t make the connection and it was only the Consultant who finally tied all my symptoms together.

Just thought I’d mention it in case any of you ladies have the same symptom and wouldn’t make the connection as it isn’t exactly very obvious

 

[openbook1]

Hi!

I first had endo aged 14 and finally a lap and excision surgery with an endometriosis specialist last year at 28.

My symptoms:
pelvic, lower back, and hip pain - it felt like my lower body was being crushed. The pain got so bad, I felt like I was going to pass out. It was debilitating.
Really painful thighs.
Needing to pee more.

I have been on Depo 10+ years. When I met with the specialist, I was having periods that were lasting 3 weeks+. He decided the depo was no longer enough and surgery was needed. Even though I was on Depo, I was now getting periods and having awful pain.
I had surgery in summer 2020, it was 4 hours long and he removed and confirmed endo. I have stayed on Depo to prevent any potential regrowth and have had zero pain. The surgeon said if I stay on Depo, I will likely have 11+ years of no pain. If I come off Depo (to have a baby), could be around 8-9 years pain free.

My recovery was really good and fast. By week 4 post surgery, I was exercising again - low impact and no weights. By week 6, I was exercising doing HIIT and light weights. My surgeon said my recovery was likely fast because I was fit and had a strong core prior to surgery. The slimmer you are, the less skin there is for them to cut through so less trauma.

My biggest piece of advice is a find an endo specialist. Not all gynes know what to look for in regards to endo while doing surgery. Make sure you have excision, not ablation as ablation can actually make people's endo worse. I recommend Nancy's Nook FB page which has a list of excision specialists on it.

 

[Ilando]

@Ilando congratulations on your pregnancy! The mental health impact and general overall health (fatigue!!!!) are very real!

Absolutely and difficulty getting a diagnosis makes things so much worse. I was on antidepressants for most of my 20s. Could be a coincidence but it was only when my physical symptoms started getting taken seriously and treated that I was able to come off the medication. GPs need much more training on it otherwise it will forever remain a condition dismissed as just ‘period/women’s problems’

 

[Keylimepie99]

had an app over the phone with consultants team recently that left me in tears, just kept telling me to take painkillers, had surgery 4 years ago..... rang my GP in literal tears, and ended up going to my childhood GP for bad pain. Resulting in being sent for an MRI, such a long and painful rd, and I feel like no one takes it seriously, currently in work with right pelvic pain, radiating to hip and in agony!

 

[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 painkillers 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

 

[PineappleQueen19]

Interesting article in The Times magazine today. It’s behind a firewall so I have archived a link:


I was in so much pain I’d faint — yet doctors ignored me for decades

Claire Cohen, 39, had spent much of her life since her mid-teens in acute pain, begging for help. Now she’s finally been diagnosed with endometriosis, she looks at how medicine is still failing to treat a condition that can have a devastating effect on one in ten women

I was in so much pain I’d faint — yet doctors ignored me for decades

archived 13 Apr 2023 09:25:26 UTC

archive.is

 

[Elisha97]

Hi, I just wanted your thoughts. I’m in my early 20s and I feel like I’m being fobbed off. I’m hopefully going to go down the route of having endometriosis looked at. I’ve never been pregnant and have no kids. Previously I’ve had loads of tests and the doctors say I have IBS and a colonoscopy ruled everything out. I am constantly in pain and get loads of random stabbing pains in my stomach area and on a few different occasions I’ve been sent to hospital to rule out serious illnesses from crippling pain that came on suddenly. I have bloating constantly and my pain can be anywhere in my mid section and the type and intensity of pain varies. I wondered if it sounded like I have endo to any of you please. My smear showed HPV but otherwise normal

My symptoms are:

Pain all over my midsection and in my bum etc

Heavy periods

Periods passing clots or tissue

Generally always unwell

Random pains

Very painful periods

Stabbing pains that are sometimes so painful I can’t move

Back and thigh pain

Pain and bleeding after sex

Issues with inserting tampons

Fatigue

IBS

Bloating

Difficulty weeing

Frequently weeing

Nausea

Shoulder pain

Allergies and intolerances

Frequent infections

Headaches and confusion

Painful bowel movements

Infections in bladder

Mucus and blood in stools

Sweating

Illness around periods

Severe mood changes

Blood in urine previously

UTIs

 

[Elisha97]

I posted in here earlier. I finally got my appointment and saw a gyno doctor who confirmed she’s sure I have endo and my womb is tilted back which she suspects is from scarring! They’re sending me to pain management to find pain relief that actually works, doing a scan to check me over and I’m on the waiting list for an op now. They’ve also suggested I go onto the coil. I wish I’d pushed for this years ago but it feels so good to be listened to and for there to be things I can try

 

[justheretoread99]

Has anyone ever gone private for a laparoscopy? (UK)
If so how much did it cost and was the process straightforward?

Saw a male gynaecologist yesterday who reduced me to tears (not the first time) and laughed at me when I explained my symptoms and wanted to be investigated for endo. So tired of the NHS and being passed from pillar to post for the past 13 years

 

[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 painkillers 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.

 

[Yorkshirewife]

Endo twins
I go between thinking just have the major surgery to being petrified and one wrong move and there is potential of a stoma and then added complications and recovery times are so long.
When my endo is really bad I can feel the part of my bowel that is worst effected like I just want to rip it out.
I mentioned earlier on that I got a hospital appointment last week but it wasn't my gynaecologist and the stand in was utterly shit.
He contradicted my normal gynaecologist and hadn't read my notes. He kept saying you need to get pregnant before surgery.

My main issue is I can't sit down and I get sharp contractions up my bum and deep in my bowel and sides.
I also have sudden bouts of the worst diarrhea, its grim!
I'm trying to be positive and hope to do more exercise once we're out of lock down.
I do believe exercise helped my symptoms but it's not a cure.


I will do! There is such little info about bowel endo x

I have bowel endo too I'm currently waiting surgery for it. And the other 83747383 places it is. Even on both ureters but yeah my bowel can be so bad. And I can't get off the toilet. Fml

 

[openbook1]

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

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

 

[bongsandstuff]

I was told I have adenomyosis back in July. I’m sure I’ve been suffering since I was 11 and first started my periods. For the last 2 years I’ve suffered with chronic bloating that never goes down day and night. My bowel issues are awful and they’ve led to deep anal fissures (cuts) as I’m usually constipated. I was told I’m not bloated by a rude male doctor who made that judgement looking at me fully clothed with an oversized t shirt on. I’m really struggling with the uncomfortable fullness, bowel issues and pain from the fissures. It never ends and I’m so ready to give up! The doctors don’t care and I’m drained mentally and physically. My quality of life has been majorly reduced by all these issues it’s devastating.