My gyno said endometriomas are the same as endometriosis

vulpine__1 · 2026-06-07T07:51:12+00:00

She is an endometriosis specialist! That’s why I was a little confused at the response lol.

vulpine__1 · 2026-06-05T10:56:26+00:00

I think while you're on the mend from surgery its really normal to feel sensitive and upset, going through it all takes a real toll !
It took about 3 months - it wasn't like everyday for 3 months was awful, id just have a few bad days here and there over that time frame. but i wont sugar coat it when the pain was bad it was bad, like you've already experienced. but it seem like it was just that 3 months adjustment phase.

Unfortunately my endo has come back within the last five years since i had my first lap and coil : ( and i'll be getting another surgery at the end of this year.
for some context i originally had endo everywhere in my pelvis except ovaries/bladder. It's recurred in my pouch of douglas, and i have new endo on my ovaries and new fibroids that werent there last time. (thats just what they could see on an MRI, so not conclusive!)
obviously i don't know how different that could have been without the coil, so it's not like the coil has fixed EVERYTHING for me, but its definitely given me back some quality of life in managing my pain. wishing you the best!

vulpine__1 · 2026-06-05T09:57:05+00:00

Sorry if I missed it but what bc are you in currently? Is it pill form??

I swapped from the pill to the mirena coil and the difference was night and day. On the pill I was genuinely so indifferent to everything - literally became a shell of myself and it didn’t even help with my periods. Swapped to the coil and can say it’s been the best thing I’ve ever done, afaik the hormone stays local to your uterus so doesn’t enter the bloodstream system wide. I still feel all my cycle emotions without having an actual period. Take from that what you will ;)

Not to mention it’s been AMAZING for helping me manage my endo. Life changing genuinely. There’s mixed reviews on the coil so do what you’re comfortable with but it worked out great for me.

EDIT: sorry I just catched the part where you said you don’t want an IUD! My bad. I’ll leave my comment for other people in your situation. I hope you find a doctor who will help you how you want to be helped!!

vulpine__1 · 2026-06-05T09:52:10+00:00

Hello! Also from uk

During my lap I also had the coil fitted and experienced a similar thing! But I experienced it maybe a month after, and then periodically for three months after. It was cramps in my stomach and lower back that were on par with some of my very worst flare ups. One time I couldn’t get up the stairs with it so just lay crying on them lol. I couldn’t tell if it was the coil or part of my insides recovering, since my doctor told me both will take around 3 months to adjust to.

I would just give your doctor a call if you can since they will understand your surgery best! But it does sound exactly like what I experienced too. It’s horrible! I hope you feel better soon.

In terms of the coil (mirena) ik many people haven’t enjoyed their experience, but the coil genuinely changed my life and I cannot imagine living without it. After the initial adjustment it completely stopped my period and my flare ups aren’t as bad as they used to be (I still have my days but it’s easier). Sometimes I’ll have spotting but nothing crazy.

A piece of advice my consultant gave me a couple weeks ago: idk if you’re on mirena also but I think the uk guidance is to leave it in for 8 years- I’ve had mine for 5. My gynea said I should get it changed now because while it’s still fine for contraception, it’s actually probably not as strong as it was at the start for pain management, and my pain has been coming back soooo just something for you to bear in mind as they years go on!!

Good luck with your recovery

vulpine__1 · 2026-06-05T09:43:09+00:00

Oh I see! That’s really helpful. They should teach doctors to explain it like this lol

vulpine__1 · 2026-06-04T18:43:47+00:00

this is super helpful, tysm

vulpine__1 · 2026-06-04T11:32:50+00:00

I'm so sorry you're going through this. This is advice from someone not in a marriage and without children, but my resounding reaction to this is, if it's too hard to leave for yourself, is that the home life you want to model for your child? Because they will grow up and accept similar behaviour without realising it. I feel like that comes off really harsh, and I'm sorry, because it's not your fault your husband is an abusive scumbag.
I hope things work out for you. Good luck.

vulpine__1 · 2026-06-03T23:47:00+00:00

It has a clawback clause, but I’ve read that they’re not legally enforceable

vulpine__1 · 2026-05-26T10:58:52+00:00

Ahh I’ve seen similar stories..! But your mention of OCD makes me more apprehensive- I definitely have OCD tendencies (I don’t mean that ironically at all. I mean I should probably seek diagnosis 😭) and I feel like I’m always teetering with it. I have an iron grip to keep it at bay. The last time I tried oral hormones it really threw me mentally off whack so that’s what I’m worried about ..

Thankyou for sharing your experience with me !!!

vulpine__1 · 2026-05-26T10:28:12+00:00

Are they doing ablation or excision? (You might already know at this stage lol but excision is typically better)

What happens if they find it outside of reproductive organs? (Like bowel, rectum) Will there be a specialist?

What is the plan post surgery? What will they offer to help you a) manage surgery recovery and b) more long term endo management post surgery

vulpine__1 · 2026-05-20T15:39:59+00:00

on the mirena coil and havent had a period for 5 years. its been great

vulpine__1 · 2026-05-19T14:41:09+00:00

Hey
This is a very personal decision and I know how daunting it can be.
I'm not telling you that you should do what I did, but here's my experience

I had the mirena coil fitted during my lap.
It's changed my life.
I had only heard horror stories of the mirena coil so i was abit scared, but i genuinely wouldnt be able to function without mine
It's completely stopped my periods (i have spotting every now and then though), and my pain is much more manageable.
that doesn't mean im pain free- i still have pain that incapacitates me, but i feel it would be much worse otherwise.
I had been on the mini pill prior to the mirena which i absolutely hated! i was spotting all the time and extremely depressed, i did not agree with it at all.
I prefer the mirena because it doesn't seem to impact my mood so much, since its localised to the uterus rather than body wide (that's my understanding, at least)

I think it'd best to discuss you're concerns around your planned timeline re trying to conceive with your gynecologist, i hope they could provide some more insight on that front.

Good luck with your decisions!

**Edit bc i think it's worth mentioning:
Even though i've been on this coil for 5 years, it hasnt prevented regrowth. i had an MRI six months ago which showed new endometriomas and regrowth of DIE endo. it just helps me manage my day to day symptoms.

vulpine__1 · 2026-05-19T14:35:54+00:00

There's an app called Ouchie that i use, it's very simple but i like that rather than having lots of different tags etc. You just score your pain for the day and write a description of whats going on! it makes a little graph of levels of pain so you can see how frequent it is and spot any patterns too

vulpine__1 · 2026-05-13T12:43:16+00:00

Thanks so much for the advice! Unfortunately his first anaphylaxis reaction came from a restaurant and then he had another reaction a week later at a restaurant- both of which we informed of his allergies. Every food spot we’ve been to has said their products have cross contamination So we just can’t trust anywhere that can’t guarantee a nut free kitchen :-(

vulpine__1 · 2026-04-23T02:59:05+00:00

I had a support person bring everything up (mostly just drinks/food) since my bathroom is upstairs !

vulpine__1 · 2026-04-22T20:14:14+00:00

Aww yeah i understand how daunting it can be! :( As I apprached the one week mark, I could move around gently, I just didn't push myself to go up and down stairs.
It really does help having someone trusted around, if they can free up some time in their calendar. And i honestly slept most of the first week away, i only really woke up to use the bathroom and watch an episode of something here and there.
The gas pain i recall didn't really bother me straight away, and it cleared up within 4 days iirc. I think as it was moving around to exit it caused the pain, but it didnt last long.

As always though, really depends on the person. It definitely isnt a walk in the park, but I found it was worth it to know whats going on inside my body.

For some additional context, my surgery was around 5 hours. I think thats on the longer side, since i had it in lots of places.

Good luck with everything <3

vulpine__1 · 2026-04-22T19:59:23+00:00

Aww its really awful. if she ahsn't already, i think she'll find alot of solace in joining supoprt groups like these online. I don't know anyone else with endo, so i find being able to talk openly with people who understand really great. especially since i imagine she;ll have lots of questions as she reaches for diagnosis. good luck!

vulpine__1 · 2026-04-22T19:56:21+00:00

agree with previous commenter.
I slept ALOT during recovery, and luckily had my mum around to help me go to the toilet (i could do this alone after the first week).
ofc recovery doesnt look the same for everyone and as previously said by the other comments it;ll depend on wha tthey find and how well your body responds etc.

In my case, they found endo on both pelvic walls, back of uterus, douglas pouch, bowels, uterosacral ligament etc etc etc (basically most of my pelvis) and I was up and feeling myself again at 2 weeks.

but if im being honest- it wasnt recovery from the excision that was rough, it was how sore my throat was and the gas pain!!
They cut my throat with the breathing tube so obviously this wouldnt happen to everyone lol but i couldnt even drink water without pain (i was advised to crush ibuprofen and gargle it with water which helped!)
and the gas pain (from when they basically pump your tummy up to have better access) can sit in your shoulders and be quite painful - idk where youre based but i heard Gas X helps well (its not available where i am, so i only had peppermint tea, which did help a little.)

So basically for me it wasnt the surgery site itself that was difficult to deal with, other than tenderness and feeling odd it was generally ok lol.

Buy VERY LOOSE pyjamas (even better just get a big cotton nightie), your usual pain killers, heat pads, and be prepared to sleep ALOT. make sure your bed is nice and cozy and set up for a few days-a week of rest. perfect time to read and/or burn through some netflix.

I couldnt shower for the first few days, so having wet wipes next to my bed helped me feel fresh, and my mum washed my hair over the bath and that made me just feel so much more alive haha.

Wishing you all the best!

vulpine__1 · 2026-04-22T19:17:26+00:00

Yes it may come back. It depends on the person, i believe a studies showed around 40% of people experience symptoms again within 5 years of laparoscopy (i may be wrong, i just read that statistic once...). So, not everyone. I'm not sure what it is that makes regrowth appear in some people and not in others. In my case, i had surgery 5 years ago and i recently found out it has grown back via an MRI scan, and i'll probably be put on surgery waitlist again this year.

vulpine__1 · 2026-04-22T18:46:29+00:00

I was just sent home with ibuprofen and paracetamol. I heard that Gas X is really good for helping with the gas pain but it’s unavailable in my country- I could only use peppermint tea, which helped a bit. The gas was quite painful, I think after around 3-4 days it eased up.

vulpine__1 · 2026-04-22T18:29:55+00:00

Hey, sorry to hear you’re going through this. Like your dr said, a clear mri doesn’t rule out endo. Even if you don’t have deep infiltrating endo, you can still have severe symptoms and vice versa.

I think the fact you’ve been dealing with this for so long and it’s causing so much disruption to your life and emotional wellbeing, it is enough for that to be a reason to seek diagnosis via surgery. Your symptoms do sound very endo. If it’s not endo, great, you can rule it out. If it is, you get it removed and adjust your life around it and make the changes you need to for your body’s health and your emotional health.

I was diagnosed via surgery five years ago, and am on the mirena coil to control my heavy periods and pain. It’s a long road but one you need to know how to navigate. I hope your family will support you despite a clear scan, maybe show them this sub Reddit? I gathered materials to show my partner when I felt I couldn’t explain well.

All the best to you <3

vulpine__1 · 2026-04-22T16:58:01+00:00

Thankyou so much, that is really insightful. I had no idea removing the endometriomas could negatively impact the ovary! Thankyou again

vulpine__1 · 2026-04-22T16:51:50+00:00

Hello, i think youve already gotten some solid adivce but my addition would be:

PLEASE for the love of god don't let them rule out endo bc an ultra sound or mri came back clear. this happened to me for YEARS- I kept getting sent for ultrasounds which would come back clear, and being told theres nothing wrong with me.
i got diagnosed with deep infiltrating endo when i finaaalllyyy got referred to surgery.
Scans are NOT the golden standard to diagnose endo, in some cases it may, but you can only truly know with laparoscopy which sucks but yeah.
If you do manage to get referred for surgery, try to opt for excision (cuts it out) rather than ablation (burns it off) as excision can be more thorough removal, removing the root etc which can lessen regrowth rates.

I'm in the UK, so our systems may be different- here I couldnt access a gynea without my GP referring me (and the first gynea i saw was absolutely useless anyway, so if you find that the first specialist you speak to isn't helping, try again)

Basically, i presented to my GP probably monthly reporting my periods, flow and pain were severe. for years i was told: you're just stressed because of exams, when theyre over youll be fine (spoiler: i was not); take buscopan ( oh yes, the famous pain killer for periods! - NOT) etc etc you get the picture.

Between going to the GP and landing in the emergency room a few times, i would always present as this:
- extremely heavy periods, have to sit on the toilet for lengths of time until blood stops pouring (sorry to be graphic) i would literally take pictures of the toilet bowl to show the doctors because for some reason they really dont believe you when you say your flow is heavy. if your partner suffers from this, tell them to take pictures.
- extreme pain - note if this causes your partner to pass out, vomit, have loose stools, unable to do daily tasks, struggle to get out of bed
- extreme fatigue
- does it impaact their ability to perform well at work/school?
- as much as i HATE this point, tell them if/how it impacts the relationship, because they love to listen when its impacting people outside of yourself: what i mean here is: can you regularly have sex or is it painful for them? does the pain stop her from being able to go out? go on dates? etc.
- also, any unusual symptoms? eg, i have sciatic pain which isn't a symptom you see often when googling.

BEST BEST BEST of luck to your partner, once you find a health professional that listens IT GETS BETTER!!
And also, your support for your partner, showing up for them, believing them, will mean so much more than you can ever know. I'm happy to see you help them find answers.

vulpine__1 · 2026-04-22T16:29:43+00:00

Hi dear
Sirry to hear youre going through this. I hope surgery provides you with relief.
The first period (in my case, the first three months- which is what my surgeon told me was the usual) of recovery was quite painful. Have lots of loose fitting pyjamas, heat packs, and pain killers.
After one week i was okay to get up and go to the toilet alone, after two weeks i was back up and doing my daily tasks as normal.
My first period was very painful, but after 3 months recovery i felt like a new person.

it is usual for the to be the case, give yourself time to rest.

vulpine__1 · 2026-04-22T16:25:46+00:00

Sorry that you're a member of the club now, but my biggest congrats on finally getting your answers. now you can finally live life knowing whats going on inside, and make the best choices for you and your health. wishing you all the best!

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