Endometriosis & Adenomyosis discussion thread

[Calmyourtitsdown]

I went back to work after a week off following laparoscopic surgeries - I had a few endometriomas removed (but they were all on and in my ovaries), and they removed a lot of scar tissue/separated various things that had stuck together in there My job is sitting at a desk though so not physical at all! One of my operations was more extensive than the other one and that took longer to feel better from but I just tried to take it easy and keep up with paracetamol and ibuprofen regularly. I hope you're on the mend soon!

Oh goodness, sounds nasty! Take my hat off to you going back to work after a week. Thank you for sharing your experience. How are you managing now?
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48 hours is very unrealistic!!! Because you have scar tissue that might affect healing I’d say you want to prepare for a couple of weeks.

I couldn’t believe it when talking to the booking in lady - I’m guessing she’s non clinical. I daren’t tell work 48 hours, they’ll have me back no problem! I had in mind a couple of weeks, I’m feeling stressed about work though, and making sure I get enough time off. I’ve really struggled coping at work the past 18 months, as my endo has gotten much worse over this period. Thank you for reply
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I had two areas of endometrial adhesions removed in 2021. I was signed off for 2 weeks by the surgeon, and then I ended up needing a further week off as my stitches got infected. I then returned to work on slightly reduced hours for a further fortnight. I really hope it goes well for you and provides some relief!

Thank you for sharing your experience. I’m really dubious about how recovery is going to go.
But I cannot wait to have it out! I’m so fed up of talking about it, so fed up of feeling it, how it’s made me tummy bloated and puckered
Did you get some relief from your removals?
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Definitely not 48 hours! Like PP, mine was large & removed from my ovary during my laparoscopy. It was 2 weeks before I started to feel ok but couldn't lift anything heavy or do anything that would be too harsh on my core. My c section 2 months ago was a breeze compared to it. For your line of work I'd say minimum 2 weeks, maybe more since it'sscar tissue. Wishing you a speedy recovery!

I’m so relieved to hear everyone disagree with the 48 hours! I’m just hoping the hospital will give me a sick note with a reasonable amount of time. I can already foresee me pestering the GP!
I took a long time to recover from my c section, so that worries me seeing as it’s in the same area and as you say; dealing with scar tissue.
Congratulations on your little one! Thank you for sharing and your well wishes
!

 

[loubylou50]

[QUOTE="Calmyourtitsdown, post: 14579150, member:
---

Thank you for sharing your experience. I’m really dubious about how recovery is going to go.
But I cannot wait to have it out! I’m so fed up of talking about it, so fed up of feeling it, how it’s made me tummy bloated and puckered
Did you get some relief from your removals?
---

[/QUOTE]
Oh I really do understand that fed up feeling - you just feel desperate for some relief and for someone to understand and validate your pain don’t you! Because I had 3 children without fertility issues, and nothing showed up ultrasound scans, even my (male) surgeon on the operation day said he didn’t expect to find anything! I could have cried! Then when I woke up and heard that they’d removed endo adhesions AND diagnosed adenomyosis along with endometriosis, well I could have cried again but with relief this time!
Yes the operation has definitely helped my symptoms, particularly the pain. Afterwards I also had a Mirena coil put in, which has helped with the long-term bleeding. I was offered that prior to surgery, but refused as I wanted the operation so that I could know what was what first. I still get some pains but nothing like as bad, they are manageable with pain.

 

[rosierose91]

Hi All!
I've just come in here for abit of advice and just to see if anyone has had any similar experiences really...

I'm almost certain I've got Endometriosis.. I've had very heavy periods for as long as I can remember, this was masked with the pill until from the ages between 16-23 as I wanted to come off anything that messed with my hormones.

Not long after coming off the pill, I sadly miscarried a few months later and TTC for 9 months until I fell pregnant with my little boy (now nearly 7) and had him via EMCS. Copper coil was inserted 3 months after he was born and this was changed again last year.

Again my periods went back to being incredibly heavy, but for around 12 months now they have been getting even worse. The pain is unbearable and takes my breath away, GP prescribed me strong Co-Codamol and sent me for a pelvic ultrasound scan as ?ovarian cyst, this came back normal.. I am not convinced and waiting a referral to gynaecology, but I'm aware this will possibly be a long wait.

A normal cycle for me recently has been this -
- Period for at least 12 days minimum - I use a menstrual cup and I have to change this 3/4x daily, if I use pads or tampons it's every hour. Leg pains, shooting up my thighs. almost feels like hot pokers particularly around my C-section scar.
- Pain and cramps which begin around 1 week before period begins, a lot of the time leaves me doubled over having to catch my breath.
- I take co-codamol, ibuprofen and buscopan for pain management particularly during my period and use hot water bottles, hot baths, etc.
- No pain during sex, but after I bleed and cramp for a few days.
- Ovulation pain, but struggling to know when I'm ovulating now based off symptoms alone due to the constant cramps.

My mum suffered from what she suspects was Endo and had to have it 'burnt away', but I think it was called something else back then.

I guess I just want to talk about it with someone.. I feel like I'm driving myself mad with it and almost think am I being dramatic?
But I know I'm not... I know it's not right.

I hope this is making sense to someone!
xx

 

[Beige Mama]

Hi All!
I've just come in here for abit of advice and just to see if anyone has had any similar experiences really...

I'm almost certain I've got Endometriosis.. I've had very heavy periods for as long as I can remember, this was masked with the pill until from the ages between 16-23 as I wanted to come off anything that messed with my hormones.

Not long after coming off the pill, I sadly miscarried a few months later and TTC for 9 months until I fell pregnant with my little boy (now nearly 7) and had him via EMCS. Copper coil was inserted 3 months after he was born and this was changed again last year.

Again my periods went back to being incredibly heavy, but for around 12 months now they have been getting even worse. The pain is unbearable and takes my breath away, GP prescribed me strong Co-Codamol and sent me for a pelvic ultrasound scan as ?ovarian cyst, this came back normal.. I am not convinced and waiting a referral to gynaecology, but I'm aware this will possibly be a long wait.

A normal cycle for me recently has been this -
- Period for at least 12 days minimum - I use a menstrual cup and I have to change this 3/4x daily, if I use pads or tampons it's every hour. Leg pains, shooting up my thighs. almost feels like hot pokers particularly around my C-section scar.
- Pain and cramps which begin around 1 week before period begins, a lot of the time leaves me doubled over having to catch my breath.
- I take co-codamol, ibuprofen and buscopan for pain management particularly during my period and use hot water bottles, hot baths, etc.
- No pain during sex, but after I bleed and cramp for a few days.
- Ovulation pain, but struggling to know when I'm ovulating now based off symptoms alone due to the constant cramps.

My mum suffered from what she suspects was Endo and had to have it 'burnt away', but I think it was called something else back then.

I guess I just want to talk about it with someone.. I feel like I'm driving myself mad with it and almost think am I being dramatic?
But I know I'm not... I know it's not right.

I hope this is making sense to someone!
xx

Not dramatic at all! push through with the gynaecologists review and do whatever helps in the meantime with the pain xx

 

[loubylou50]

Hi All!
I've just come in here for abit of advice and just to see if anyone has had any similar experiences really...

I'm almost certain I've got Endometriosis.. I've had very heavy periods for as long as I can remember, this was masked with the pill until from the ages between 16-23 as I wanted to come off anything that messed with my hormones.

Not long after coming off the pill, I sadly miscarried a few months later and TTC for 9 months until I fell pregnant with my little boy (now nearly 7) and had him via EMCS. Copper coil was inserted 3 months after he was born and this was changed again last year.

Again my periods went back to being incredibly heavy, but for around 12 months now they have been getting even worse. The pain is unbearable and takes my breath away, GP prescribed me strong Co-Codamol and sent me for a pelvic ultrasound scan as ?ovarian cyst, this came back normal.. I am not convinced and waiting a referral to gynaecology, but I'm aware this will possibly be a long wait.

A normal cycle for me recently has been this -
- Period for at least 12 days minimum - I use a menstrual cup and I have to change this 3/4x daily, if I use pads or tampons it's every hour. Leg pains, shooting up my thighs. almost feels like hot pokers particularly around my C-section scar.
- Pain and cramps which begin around 1 week before period begins, a lot of the time leaves me doubled over having to catch my breath.
- I take co-codamol, ibuprofen and buscopan for pain management particularly during my period and use hot water bottles, hot baths, etc.
- No pain during sex, but after I bleed and cramp for a few days.
- Ovulation pain, but struggling to know when I'm ovulating now based off symptoms alone due to the constant cramps.

My mum suffered from what she suspects was Endo and had to have it 'burnt away', but I think it was called something else back then.

I guess I just want to talk about it with someone.. I feel like I'm driving myself mad with it and almost think am I being dramatic?
But I know I'm not... I know it's not right.

I hope this is making sense to someone!
xx

Oh bless you, no you don’t sound dramatic at all! I completely understand that feeling of knowing something is wrong, even when all the tests show nothing and the doctors don’t seem to be listening. You just know that the pain is real and that something must be causing it!
I hope your gynae referral doesn’t take too long to come through, be persistent with them when you finally get seen and don’t get fobbed off until you’ve had some proper investigations and answers.

 

[queenamber]

Hi All!
I've just come in here for abit of advice and just to see if anyone has had any similar experiences really...

I'm almost certain I've got Endometriosis.. I've had very heavy periods for as long as I can remember, this was masked with the pill until from the ages between 16-23 as I wanted to come off anything that messed with my hormones.

Not long after coming off the pill, I sadly miscarried a few months later and TTC for 9 months until I fell pregnant with my little boy (now nearly 7) and had him via EMCS. Copper coil was inserted 3 months after he was born and this was changed again last year.

Again my periods went back to being incredibly heavy, but for around 12 months now they have been getting even worse. The pain is unbearable and takes my breath away, GP prescribed me strong Co-Codamol and sent me for a pelvic ultrasound scan as ?ovarian cyst, this came back normal.. I am not convinced and waiting a referral to gynaecology, but I'm aware this will possibly be a long wait.

A normal cycle for me recently has been this -
- Period for at least 12 days minimum - I use a menstrual cup and I have to change this 3/4x daily, if I use pads or tampons it's every hour. Leg pains, shooting up my thighs. almost feels like hot pokers particularly around my C-section scar.
- Pain and cramps which begin around 1 week before period begins, a lot of the time leaves me doubled over having to catch my breath.
- I take co-codamol, ibuprofen and buscopan for pain management particularly during my period and use hot water bottles, hot baths, etc.
- No pain during sex, but after I bleed and cramp for a few days.
- Ovulation pain, but struggling to know when I'm ovulating now based off symptoms alone due to the constant cramps.

My mum suffered from what she suspects was Endo and had to have it 'burnt away', but I think it was called something else back then.

I guess I just want to talk about it with someone.. I feel like I'm driving myself mad with it and almost think am I being dramatic?
But I know I'm not... I know it's not right.

I hope this is making sense to someone!
xx

You're definitely not being dramatic. This does sound like endometriosis or adenomyosis symptoms. I think there's also an increased risk if your Mum had it. She probably had it lasered off but there's a lot more research now that suggests excision is more effective than ablation. Excision cuts it out like a root, whereas it has a higher chance of growing back with ablation/laser which only really removes the top layer (obviously it's more technical than that but hopefully that analogy makes sense). Unfortunately this usually does require a specialist surgeon so don't let them fob you off and definitely push for a specialist.

I've learned a lot from this thread but I'd also highly recommend joining some Endo and/or Adeno Facebook groups. They're really helpful and it's always nice to know you're not alone. These symptoms can feel so isolating and debilitating.

 

[Brandy]

Sounds very much like Adenomyosis which is what I have

 

[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

 

[Quarrantinemadness]

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

 

[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

 

[IndominusRex]

You need to ask your surgeons what they expect. If they’re an Endo specialist then the stoma risk shouldn’t be higher than 2%. If they’re giving you a number higher than that ask them why. And if they say the risk is higher then push back as it means they’re not specialised enough. I was TERRIFIED about needing a stoma but I’ve had 2 bowel surgeries and been fine.

 

[Quarrantinemadness]

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

That’s good to know thank you! I don’t feel as worried about the bowel bit now x
Yes I think I’m having dye put in tomorrow to check the tubes. Also have a blood test before hand.
---

You need to ask your surgeons what they expect. If they’re an Endo specialist then the stoma risk shouldn’t be higher than 2%. If they’re giving you a number higher than that ask them why. And if they say the risk is higher then push back as it means they’re not specialised enough. I was TERRIFIED about needing a stoma but I’ve had 2 bowel surgeries and been fine.

I will do, thank you. If he has my MRI results straight away tomorrow he will be able to discuss it with the bowel consultants same day, if not it will not be until their next meeting in a month

 

[slidders]

Hi all!

Thank god I found this thread!!

I was diagnosed with anenomyosis last summer and have been battling with the NHS to try and get something done. I had a hysteroscopy done early this year where they also wanted to remove a polyp but it was too large. I had options discussed with me (I’m 100% sure i want a hysterectomy) but I feel like I have to jump through hoops to get to that point.
I don’t want the coil- too many horror stories, so endometrial ablation was suggested. I reluctantly said ok despite some research suggesting it can make adeno worse.

I went back a few months later to have the polyp removed under general and have the ablation done at the same time. According to the machine that does the ablation, was uterus was too large (no tit I’ve been carrying it around for years!!) so couldn’t do it. The technical term was a bulky uterus, lovely.

Now I’m back in September to discuss options again.
I had one ok period after the polyp was removed and I am convinced I could feel it (doctor said I couldn’t) but now that feeling has gone. But I’m currently suffering with another horrendous period. The whole middle 3rd of my body hurts. Naproxen nor Mefanemic acid don’t touch it. And I am passing some huge clots.

My question is, to those of you who have had hysterectomies, how did you justify this decision? I can evidence my problems going back 10 years, and I get they want to be sure it’s what I want, but it is, and I can’t cope much longer with wearing 2 sanitary towels and changing clothes constantly.

 

[veevee04]

I've had to give up hormones. it was making me feel suicidal but took the pain away. I'm so sensitive to any hormones , I'm going to have to try get by on pain as much as I can I'm absolutely devastated. Last period wasn't too bad but already feeling pelvic pain on this cycle 10 days in. I wish there was treatment that wasn't hormone based I've never been able to cope with them.

 

[yeoooo]

Hi all

I was wondering if anyone suffers from mid cycle bleeding? Bright red and more like spotting I guess. Has happened for two cycles and currently second day of it. Im on day 10 of cycle. Never happened before

 

[slidders]

Hi all

I was wondering if anyone suffers from mid cycle bleeding? Bright red and more like spotting I guess. Has happened for two cycles and currently second day of it. Im on day 10 of cycle. Never happened before

Yes but I had a polyp. And it wasn’t limited to mid cycle, just when it felt like it. Was so big it was rubbing against the inside of my uterus and causing it to bleed. It stopped once it was removed a few months ago.
I would hazard a guess there’s usually a reason mid cycle spotting would happen, especially if it’s now more than once? X

 

[Lurking2007]

Hi guys
I've had a endometrial ablation and sterilisation on Thursday, I'm looking for advice from anyone who's had similar.
Firstly when I was put to sleep it was 9 am and I woke up at 1pm in recovery is that normal?
Secondly I have to cuts from the sterilisation one in my bellow Button and one lower down on my stomach. I've been bed bound since Thursday and TMI I've had light bleed but it stinks! Is this normal?.

 

[IndominusRex]

Hi guys
I've had a endometrial ablation and sterilisation on Thursday, I'm looking for advice from anyone who's had similar.
Firstly when I was put to sleep it was 9 am and I woke up at 1pm in recovery is that normal?
Secondly I have to cuts from the sterilisation one in my bellow Button and one lower down on my stomach. I've been bed bound since Thursday and TMI I've had light bleed but it stinks! Is this normal?.

All sounds normal. The smell will be because your discharge will include burnt lining.

 

[Looboo]

Hi all - is anyone really overweight and in need of a laparoscopy? I have an appointment to have a consultation for it and I’m honestly scared they’re just gonna be like ‘nah you’re too fat’

 

[yeoooo]

I w

Hi all - is anyone really overweight and in need of a laparoscopy? I have an appointment to have a consultation for it and I’m honestly scared they’re just gonna be like ‘nah you’re too fat’

i would guess its more of the question of the aethestic (can’t spell that!) to knock you out rather than the procedure itself. I was told (bmi of 30) that I’m at slightly higher risk than the “normal” (ugh) BMI relevant to me…