Endometriosis & Adenomyosis discussion thread

[openbook1]

I need a place to vent and am not looking for a debate or advice.

Depo Provera has been my treatment of choice for Endo symptoms. It is not recommended typically for long term use because of potential bone density loss.

I had to meet with a new doctor today and straight away she asked how long I had been on Depo. I told her, and she told me how I shouldn't be on it long term due to the bone density issues and how bad it is. I felt like I was being lectured and scolded. It was awful. She asked why I hadn't considered other bc (pill, arm patch, coil etc). Depo is the only one that is a bc and also can prevent endo regrowth. I told her that Dr R advised me to stay on Depo post-surgery to suppress regrowth. She looked surprised, almost like she didn't believe it. She then asked if Dr R had suggested Visanne or Lupron. I said no, he's happy with me being on Depo.

I find it absurd that she thought Lupron, which is a chemo drug for breast and prostate cancer and in some people has caused irreversible menopause is a better option than Depo. In my mind potential irreversible menopause is worse than potential in some cases reversible bone density loss. And with Visanne, it is not considered a birth control yet you also can not take hormonal birth control while on it.

I have done all the research I can and the pros of a comfortable painfree lifestyle thanks to Depo outweighs any risk. I take extra supplements and lift weights.

 

[pinkypurr]

does anyone have night back pain?
i have no back pain during the day or in the gym, but at night i can only sleep a few hours and i get a burning back ache. i finish my nights sleep sitting up in a V shape with legs elevated in bed orstraight out if on the sofa. the pain kind of drains away

my uterus lies on its back against by back so i am wondering if it could be endo. i had a mri scan of the back - no problems with my spine. the physio says my lower back mucles are really strong from the gym and well defined so it can only be something internal

ive had surgery to remove an endo polyp that was huge like grapefruit size at the time the endo had concentrated on making the giant growth so htere was no endo elsewhere in my abdomen, but i am worried that this back pain started about. a year after that surgery.

has anyone else had an endo polyp? mine had a blood supply but that was fixed so it cant grow back in the same place but i guess i could get another one. i just wonder if youre prone to polyps, can you grow them anywhere?

 

[Bgr101]

i'm taking a pill at the moment, and although it has helped with some (not all) of the pain it's done nothing for my self esteem. I just feel fat, bloated, swollen and sore almost everyday! Hope you start to feel better soon

Can i ask where you feel your pain and to what extent ?

 

[sarapal23]

Hey all, I have suspected endo. Had some really extreme periods, plus bowel and bladder issues which I suspect is linked. I was originally referred to gynaecology in 2019 for unexplained bleeding after sex plus in between periods, and tbh the doctor done a smear, STI check, felt about and said I probably have endo and that a mirena coil would take my symptoms away. At that time I didn’t think to push it to get a proper diagnosis and being honest the mirena coil has taken everything away, periods and all the horrible symptoms.. anyway, I get married next year and would like to TTC after. I’m thinking about getting my coil out to try and understand my cycle a bit better ahead of TTC and I suppose go to the doctors to investigate if I’m suffering. Not sure what I’m looking for in terms of advice but has anyone on here suffered with trying for a baby or any success stories? Do you think it’s a good idea to come off contraception and get used to my natural cycle so I have all the info? For reference I’m 31, have even on contraception in various forms since I was 17

 

[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.
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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

 

[Readread]

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', i'm not a huge fan of it as you're not supposed to have a break between packets and I would prefer to keep everything as 'natural' as possible, plus, it's not exactly helped with the pain (however the symptoms have lessened).

Got my MRI results back and they found a big gang of cysts and pelvic fluid .

Sorry to anyone that's having a bad endo day/week!


good luck for tomorrow!

Thank you!

 

[Magpierainbow]

had heard of it being in the nose and causing nose bleeds,

That's really interesting I have found that happening to me cyclicly (hope that's right word) I found articles about it but haven't been to gp to be referred or anything as am now on verge of menopause so am hoping to get to other side with pain management
Hoping everyone doing ok as poss x

 

[Bgr101]

Of course. So initially it was very heavy and painful periods. To the point that I was bedbound for the first few days of my period, would often collapse in agony and suffered from horrific sickness and diarrhea during my period. I saw my GP repeatedly as a teen but they simply dismissed it, so I felt like I had no choice but to learn to live my life around my period. But then a couple of years ago I began bleeding and having period-like cramps from mid-cycle onwards which was when I went to my new GP and basically refused to leave without a referral. I then went through every test imaginable, bouncing between different useless gynecologists', before eventually being told that I had kissing ovaries which suggested advanced endometriosis. Unfortunately Covid happened and everything ground to a halt, but then earlier this year I began to develop nerve pain in my legs and could barely stand let alone walk during my period and I knew that something had to be done. Whilst I don't yet know the ins and outs of what was done during my surgery, my consultant did tell me afterwards that they were able to remove some endo and the adhesions on my ovaries, which although it won't cure me, may alleviate some symptoms. I was terrified of having an operation, but it felt like the only hope I had and ultimately I finally have a diagnosis.

Thanks for this. Im glad you got the help you needed. Such a pity you had to pay for it all yourself x

 

[soymilk]

hi there I’m quite a bit confused at the moment in regards to endometriosis. I’m currently being examined and treated by a specialised endo team (thank god) and they very much suspect I have it. however, I had a big cyst on my ovary which she thought was an endometrium but it’s gone now. and then I had an MRI which came back completely clear and normal? she says the only thing we can do now is to book me in for a laparoscopic examination to see if there is any endo. I have ALLLL of the symptoms and have had since my period started. it’s only gotten worse since I quit birth control back in 2017. so it all fits perfectly. but… what do I do if I have a lap and there is no endo?! I’m so confused! xxx

Hi! The cyst you had might have been follicular; these are the ones that you can get when you're ovulating and you can experience all kinds of pain because of them, they usually disappear overtime but when they're there they can be really uncomfortable!

 

[Pacho]

Does anyone know of a link between endometriosis & mouth ulcers ? I am interested to know if any of you suffer with mouth ulcers on & off throughout the year & if it is a symptom of our endometriosis.

 

[Bgr101]

I paid to see a private gynaecologist before who i knew specialised in vaginismus and vuvlodynia which was what i wanted help with and she was able to give me medication and i can just get it now from the NHS directly. It could be worth paying the initial fee getting a diagnosis and then being referred back to the nhs to a.specialist. just a thought.

Also you can request a female if you dont feel you are getting the right response from a male. X