Endometriosis & Adenomyosis discussion thread

[bringingdownthebs]

it's been a long time since anyone posted on here, so I thought I'd check in with the fellow endo sufferers and see how everyone is doing?

horrific currently in hospital with a really bad flare.

 

[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!

 

[justheretoread99]

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

 

[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.

 

[Sailorontheseasea]

Adenomyosis sufferer here too, started after I had my first baby and just got progressively worse. Absolutely horrific and my heart goes out to everyone who suffers with it and endo etc etc. Truly is debilitating and having a doctor/anyone that listens, understands and takes action is absolutely crucial to mental health - I don’t think people realise it ! xxx

 

[soymilk]

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

Hi! A lot of your symptoms are similar to those I have / have had. They come and go and the pain ranges from manageable to me staying in bed for the whole day. I would make an appointment with your gp / gynaecologist to discuss the idea of endometriosis with them and hopefully they'll test you!
Good luck with whatever you chose to do and in the meantime come back here to let us know how you're getting on! Hearing other people's stories really make you feel like you're not alone in your pain and the tips being passed around the group are really helpful

 

[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

 

[soymilk]

I realise this is a sensitive post given that endometriosis can cause issues with fertility etc so I hope I don’t offend anyone (I’ve had my fair share of fertility issues too).

I’m 5 months pregnant with my first. My last surgery for endo was 18 months ago. Recently, I can feel the familiar pain in my left hip is back and I know it’s endo reoccurring. It’s not a problem in daily life walking, sitting etc but causes lots of pain when I go to the loo!

It’s making me so nervous as there is no way I can give birth naturally. The strain of going to the loo (tmi!) is enough to make me feel faint when it’s at its worst. I’m dreading mentioning it to my consultant as I know they’ll be really dismissive like they usually are with everything endo related.

No real reason for my post other than to vent x

Congratulations on your pregnancy, this is always great news!
Please be open with your consultant regardless of however you think they may react, it's important for them to have all of the information should they need to help you

 

[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

 

[TheSilverFox]

Anyone had endo deep in their bowel? Did they manage to get rid without a stoma needed?
1st diagnosed in 2018, had removal by laparoscopic surgery. Tonight had the worst news (I realise it could be worse). My insides are a mess, and that’s from what they could see on an internal and external ultrasound. My consultant is meeting with some kind of medical board to present my scan (and MRI which I’ve been booked in for Thursday morning) to some bowel surgeons. Thought I was only going back for a follow up as I have a 7x7 cm cyst on my left ovary, 4cm on right. That seems the least of my worries now, although still needs to be checked it’s not a tumor, he thinks it’s an endometriomas though, so fingers crossed.
I feel so sad, I always think people think I’m a moaner, but I genuinely am in pain. My pouch of Douglas is obliterated, I have stage 4 endo now. Also have 0.7 endometrium. Worryingly, I was scanned a year ago and there was nothing so to me it seems so fast. At the moment both ovaries, bowel, and uterus are all stuck together.
He asked where I was in terms of kids, I don’t have any, was previously told very unlikely, I have PCOS too. The consultant said he would do what he could to save my ovaries this time round. MRI will also look at my fertility (not sure how, there was a lot to take in). If I’d have said I’m done with kids I think he would’ve been telling me hysterectomy would be best. I’m mid 40’s, just don’t think I can accept that mentally.
Anyway, sorry to moan

I'm so sorry, that all sounds horrible. I was similar - had the same with pouch of douglas (never even heard of it before then!!), plus everything was stuck to my bowels, ureters etc. They said it was all bound up together in scar tissue as well similar to being wrapped in spiders webs. I had bowel preparation and surgery on my bowel (I also had a few months of medical menopause first) and ovaries, uterus, tubes (basically everything in there!). They managed to separate a lot of my bowel from my uterus and ovaries/tubes but had to leave the sections that were affecting my kidneys and ureters as that was deemed too risky. It made a noticeable different to my pain levels post-surgery and a stoma was never mentioned to me. This was before I had children and I went on to have several cycles of IVF. I'm not sure what fertility related things they can tell from an MRI? You'd need blood tests for hormone levels/egg reserves etc, plus a dye test to see if your tubes are patent (mine weren't because of all the inflammation and scar tissue they were being squashed and also totally immobile). I had multiple endometriomas on my ovaries (from memory some were big - 10cm+), dermoid cysts and endometriomas inside my ovaries. They took all of those away, even the ones inside, although some did come back over time. The pain has stayed much lower than it was before the surgeries I had and it was over 10 years ago now so totally worth it for me. Good luck xx

 

[Pennypennypenny]

Hi all,

Do any of you with Endo suffer with your teeth/gums?

(Not been diagnosed with Endo, waiting for results of a scan and then a laparoscopy)

Since as long as I can remember I’ve suffered with inflamed and bleeding gums. I brush twice a day with a good electric toothbrush, floss, follow all advice from my dentist but nothing seems to change. Id hate the fact my dentist probably feels I don’t look after my teeth properly.

I’ve read that having Endo can affect gum health and more likely to have gum disease (& hormone levels can too, especially pregnancy) but I can’t find much info on it all. Would love to hear if anyone is similar.

I did not know this. after years and years and years of hell was diagnosed with endo back in 2000. Long story short I am now under a gum specialist

 

[openbook1]

Yes, I am from the UK and was completely dismissed by any doctor that I saw. It was only when I moved to Canada, I realised how awful the NHS is for diagnosing.

 

[Inforapenny]

Evening ladies, desperately looking for your opinion and advice.
I am at breaking point. My periods are horrendous due to bladder, pelvic and bowel serverly affected by lesions, scars, endo etc.
I am bed bound, I faint with pain, I pass stools with blood etc Then ovulation is utterly miserable I feel like I have the flu, I am exhausted, sick, migraine the lot.

After trying to conceive for over a year we've given up, I need to put my health first.
I have decided to go back on the depo contraception jab

I went to get it today but stupidly didn't realise I could have unprotected sex before getting it - my fault. I've built it up so much, to decide not to continue to TTC and give up and just accept this is it. I have been so so unwell and disabled I couldn't wait to get it.
Lots of emotions have gone with this appointment.
However the nurse said we can't give you the depo injection and I burst into tears. It all came out, I was so mortified I just sat there and wept. I said I felt suicidal and I can't cope.
The response from the nurse was have you been to the gynaecologist? I said yes and the cruelty of telling me just get pregnant.
Any way the nurses didn't quite get it, I wasn't upset at them and the rules but they literally wanted me to out asap. They got the doctor in to tell me about fertility and how I should try
But I'm mentally, emotionally and physically done.
The doc then said 'there there' you shouldn't be in this 'state' (I just quietly cried).
The nurse then said 'i get it I'm a woman'.....wtf, wtf!!!! I'm suicidal over this and they chose to ignore.me.

Anyhow they decided to give me the morning after pill and then I can come back to get the depo once I prove I'm not pregnant.

So this is my question. I am not pregnant, I know this.

Ovulation and on my period ruin my life.
I have just stopped ovulation 2 days ago.

So do I take the morning after pill now? Or do I wait and save it for my period or save it for when I ovulate later next month?
Basically the pill stops ovulation so if I take it
around my ovulation it'll hopefully stop the
Severe symptoms that I dread every month.
Or do I take it now in the hope I get a 'period' quickly and so can get the depo injection asap....but that might not work as it doesn't always induce a period.

What do I do? Sorry for the very long post

 

[loubylou50]

Oh god, am in the middle of a family day out and a flare up has just started out of the blue I hate how this controls my life! I felt ok this morning and stupidly didn’t bring any of my usual bits (strong painkillers, TENS machine) so it’s really caught me out. It’s literally like a hot poker going up through my cervix and intense cramps across my lower back, back of legs and stomach
Sorry to moan, just I know people will understand here and so many others just think it’s period pain!!!

 

[Inforapenny]

thank you for your replies, it warms my heart! so sad to hear what you're all going through I’m still pretty confused by the whole thing, but I’m happy to hear keyhole surgery hopefully won’t be too bad. in some way, it’s quite a relief to know what has been going on hasn't just been me imagining things. I’ve heard so many doctors through the last 10 years saying “you’ve just got really bad periods, ok”

can they only fully 100% confirm that it's endo once they have done the keyhole surgery?

I was diagnosed through MRI scan and my history plus colonoscopy.
The MRI was really detailed but underestimated how 'riddled' I am x

 

[Inforapenny]

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.

Two things that stood out to me: depo injection and exercise.

I came off the depo injection approx a year ago and my endo symptoms definitely went through the roof. To the point I ended up in hospital by April.
I believe going back on the depo injection will help but we're trying to conceive.

I'm also a big believer in exercise being a massive help in surpressing my symptoms. Up until lock down I cycled to work everyday (16 miles every day) and I swam and did a type of hardcore circuits .....I was in my best shape (I was due to get married and the fear of being in my wedding dress helped ).
I was at my lowest body weight and highest muscle mass. I believe unbeknown to me this all regulated my illness.

I've put on weight in lock down and lost all motivation to exercise and I've noticed my muscle mass has gone and my symptoms have got so much worse. I need to start doing something because I think my weight gain hasn't helped. Apparently endorphins reduce pain.


My advice is:
*Download a fertility app as this will give you an indication of ovulation and cycle times
*Log all bowel movements. Check for mucus and blood
*Log all bladder movements
*Log all pain where and when and severity out of 10
*Log all food
*Note when you're incontinent (even if it's just a dribble!)
*Have Peppermint tea as a substitute for caffeine
*Log when your periods are and what they are like
*Use reusable sanitary pads...much better for leaks
*Tell work and ask for support
*Take time off when you need it and sleep, your body is exhausted trying to fight the endo
* Be very careful who you talk to about infertility,many if my well.meaning friends are completely insensitive
* Avoid alcohol and smoking
* If you go to the GP do not be fobbed off that you have IBS or a UTI
* Ask GP for a celiac test from GP
* Be careful with infections. I got a terrible angular cellulitis because my body can't fight infection. With endo your body had a lower immune system
* Try and plan around times during ovulation and I also find the first 2 to 3 days of my period are hellish

 

[Elisha97]

I'm so glad to hear you were finally diagnosed makes you realise it wasn't all in your head, I cried with relief when I got my diagnosis because you do start doubting yourself.

thank You so much! I did the exact same thing, I’d been told it was nothing for so long or I just have IBS xxxx

Hope you’re getting good medical care @Elisha97 x

Thank you! The care is shitty but at least I have a diagnosis now x

 

[soymilk]

Keep us updated. My main issues are my bowel and Bladder.
I spoke to a temp gynaecology consultant this week and he was just rubbish tbh and was like meh are you sure it isn't crohns.... He hadn't read my medical history he just wanted to get me off the phone. I realise how make or break your consultant can be.
And he was like get pregnant and the pain will go away. Thanks mate.

I found the worst part of all my investigations was the bowel prep for my colonoscopy.
If you can drink that stuff everything else is a breeze, well sort of

I had a colonoscopy two years ago so I know all too well about those drinks!
And I know all too well about insensitive male doctors too. It's such a shame there isn't more education about this as it is a lot more common than people think!

 

[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

 

[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