Endometriosis & Adenomyosis discussion thread

[just_stir_it_una]

I just got the notes from my first appointment at the endometriosis clinic, and apparently I have an endometrium which is 4 x 3 cm. (1.5 x 1.2 inches) on my right ovary. I know it’s probably nothing compared to others but I’m just so surprised by the size of it?!

 

[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.

 

[Its_Me]

Hi everyone, I posted a while back that I was due surgery to remove an endometrioma from within my caesarean scar tissue.
That was 8 weeks ago now, they managed to get it all out, despite saying it was a ‘large area’ (no shit Sherlock, that’s what I’ve been telling you all ) and put a mirena coil in at the same time.
Recovery was slow, almost like having another caesarean! Waking up the next morning wasn’t pleasant, I had swollen to the size of the michelin man, and couldn’t walk.
Pain does seem to have decreased, but I do still get the odd pain in the area that is reminiscent of the pain I had when the endometrioma was in situ. Which does worry me a little bit
I’m struggling though with the remaining swelling around my middle. I’m not sure if it’s the coil, or still recovering from the surgery, or I’ve just got fat (maybe all three!). But I was wondering if anyone could share if they were bloated after surgery, and did it ever go down?!
It’s really getting me down, I do have history of ED, and body dysmorphia. Thank you for reading

I remember being really bloated after laparoscopy, I was super skinny at the time and my belly was like a football but I don’t really remember for how long. Maybe a castor oil pack could help?

 

[Yorkshirewife]

Yes, I had bilateral uterolysis. I couldn’t tell you much about it though! I know it’s important to keep an eye on things as you can lose kidney function. My endo isn’t particularly painful but I’d constantly have traces of blood in my urine whenever tested & it stumped my doctors as my kidneys were fine - we now know why.



3x4cm is medium sized Under 3cm are considered small and 7cm+ is large. I had a 7cm one removed & I’ve heard of 10cm+

God yeah was the same with me! Had ultrasounds and everything and then with my laparoscopy they found out why. I've asked loads if people have had it, just wondered if it was painful

 

[Vee6]

How did you get your laparoscopy if you had once please?

I went private for mine in the end. I wasn’t taken seriously by any gps. Private lap and dye showed endo and was cleared out at the same time.

Hi all! I thought I would join in on this thread. I was diagnosed with endometriosis 20 years ago when I was 26 via laparoscopy, went on Zoladex injections for six months and since then its been controlled by Microgynon (combined pill). I've had a couple more laparoscopies over the years, and two years ago I had a cervical polyp which was biopsied (thankfully benign) and removed.

@PollyPerks On a day to day basis the adeno diagnosis doesn’t make much difference. Treatment is slightly different including ablation. How did you find zolodex?

@Keylimepie99 if they’re telling you to just take painkillers have they given you mefenamic/tranexamic acid? If not ask for them. Have you had your MRI results? A good consultant will be able to spot endo from an MRI but not all do.
[/QUOTE
I had zolodex years ago. Calmed things down endo wise but the hot flushes were something else!!
I’m really wanting to take something to stop my periods now. But when I tried the pill a couple of years ago I gained weight and was so moody - sod that!

 

[Bgr101]

so sorry to hear that, I hope my post wasn’t insensitive in any way. Xx

No no not at all . Good to hear all sorts of different experiences.

 

[JoeBloggs]

I’ve probably mentioned this before but my mind is spiralling. I’m booked for a hormonal coil next Friday, I was all set to cancel it but I cannot shift this dull ache and sharp pain in my womb area. Seems it may be endo pain (I’m extra lucky and don’t get many symptoms).

After looking it up, a hormonal coil can be used to help. I’ve had one before but I have another 18 months left on my Copper one so I was just going to sit it out but the dull ache is pretty constant.

I know everybody is different so reading online just complicated things. My husband has no idea and my girlfriends don’t have coils or endo.

 

[Inforapenny]

@Inforapenny The morning after pill only works for 48 hours after sex.

Sorry you’ve not got any support from the doctors/nurses. It’s so hard! Whereabouts are you based? Perhaps someone could recommend a good specialist for you who will actually listen.

I just don't know whether to bother to take it now - I don't mind getting pregnant
But do I save it for when I am ovulating to ease the symptoms?

I'm in the Suffolk/Norfolk region 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?.

 

[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
!

 

[Bgr101]

Yes absolutely, I get this type of pain a lot! Across my lower back and down the backs of my thighs, it makes my legs feel shaky. I get a lot of general joint pain and fatigue too, all inflammation-based I guess. I was officially diagnosed with Endometriosis and Adenomyosis in March after a laparoscopy and excision - after 10+ years of pain and 7 years after I first went to the doctors!

Thank you. Are you on medication or what is your treatment plan?

 

[Inforapenny]

Really sorry for TMI. Does anyone else have the toilet bowl full of blood after passing stools? It’s not a period it’s just from the back end
And if so is this because it’s endo on your bowel?

Yes! I have this during ovulation and when I'm on my period. I think most women will know if it's period blood or back passage blood
Do you get rectal pain too? And do you pass mucus as well? This is a sign that your bowel is inflamed.
Do definitely let your GP know because passing blood it not right x

 

[Magpierainbow]

How are you feeling now? X

Hi Sorry for late reply! Thank you for asking, I’m now on the mend from my chest infection. So much so, I rang the doctors the other day, and spoke to a different GP about my diagnosis.
He told me, that standard procedure is for the surgery to attempt to help me, before a referral can be made to gynae? Is that standard, or does it depend on what area/part of the country you’re in?! He talked to me about three different pathways, with the pill. And sent me a link with the details. I’m undecided at the moment, as to which pill to try. But at least this doctor seemed more willing to help. My ‘lump’ has grown, and is causing me a lot of pain. I have also noticed in recent months that I am very bloated around the middle. Has anyone else experienced this? I’ve never really been bothered my middle, even post caesarean, but it’s actually getting me down. I doubt very much going on a pill, will help with that
[/QUOTE]
I'm not familiar with standard procedures since pandemic started sadly but at least doc wants to work with youalso when i was going regularly it was diff in each area. if you worried ask for referral to endo specialist possibly? If bloating is up & down I would check with doc, if permanent more lumplike could well be fibroids I would write a diary of everything then ask see the helpful doc (when you feel well enough) & go through everything, don't ignore anything or feel like you shouldn't get checked out however hard it is to get to a specialist, although I know well how much energy it takes to get there. Let us know how you go? 🫂

 

[justheretoread99]

hi everyone! if people don't mind could they tell me what hormonal pill they've been put on / tried and has worked the best for them? i was prescribed 'Sibilla'

Haven’t been diagnosed with endo yet (waiting for my referral appointment) but I’ve had all the symptoms for years.

I can only talk about contraceptive pill.
Ive been on ‘Cerelle’ progesterone only pill for 5 years now. I don’t have a break so don’t have periods which is a godsend for me as I suffer horrendously when I’m on.

My main symptoms that have obviously stopped are: heavy bleeding, passing clots, extreme pain and vomiting when on my period. But I still get fatigue, very light spotting, pain during sex and back ache. Also my weight is up and down and suffer with acne due to this pill. I hope your pill works for you x

 

[Inforapenny]

Does anybody else have interstitial cystitis as well as endo? Feel like if it’s not one thing it’s the other

Yes!!! I'm STILL waiting for my urologists appointment.
It's horrendous. When I'm having a bad flare up I can pee 30 or 40 times per hour on the hour, burning, can't empty my bladder.
I don't get any sleep and have learnt not to get upset if I can't sleep and accept the next day I'll be exhausted.
How are they treating you for it?
Have you got endo in your bladder?
I don't actually have much in my bladder but been told endo has destroyed my bladder nerves.
I have severe anxiety about going out or work or long meetings at work because I need to know where the loos are and if I can get to them etc

 

[Elisha97]

How did she confirm it did they do an MRI?

No, I’m booked in for one. She thinks she can feel scar tissue and my womb is tilted back as if the scar tissue has secured it that way as well apparently

 

[Elisha97]

Sorry- forgot the annoying bit. The consultant insisted on an ultrasound before he’d agree to surgery so that delayed things by about 3 months.

Also worth being prepared for the fact that surgery doesn’t cure anything. I’m now on my third one but at least to relieves the symptoms each time

thank you, I’ve not had an ultrasound but would be really happy to have one. Hopefully it’s soon

 

[Bgr101]

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

Did you go private for your MRI or how did you get one ?

 

[Inforapenny]

Hi guys, I've been reading this thread for a while now and finding it so useful, im sorry you are struggling too but it's helping me realise I'm not on my own with feeling this way (the hospital would make you feel that way though).

Can I please ask what others do when the pressure/pain from front of pelvis to bum is too bad to go to the toilet? I am in agony and bursting to go but the stabbing pains are so bad I can't get my body to release and actually go . I can barely sit, stand or walk with the pain right now. If anyone has advice I will be forever grateful .

Have you been given pain meds? I've got a whole box of different types of meds like morphine. It does help x

 

[Brandy]

Sounds very much like Adenomyosis which is what I have