u/lilbbtee

im a 31 year old mixed race woman working in the arts + cultural sector, as a programme producer + facilitator (working in galleries, museums, with arts orgs) but actually trying to pivot into something slightly different now - i have some really good friends but i never seem to have another girl to do stuff with as my friends who are really similar to me are either sober and dont like going out, or live in different countries / cities, or always really busy, or i have other people to do things with but theyre not really MY PEOPLE if that makes sense - not on the same wavelength, maybe not so interested in the events i want to go to or things i want to do, i feel like im in a space where most of my friendships are 'catch up over dinner / drinks / an exhibition' friends.

im bisexual, in a relationship with a man, love my queer community!

looking to cultivate more community with queer people + women / non binary peoples!

i really like hiking, being in nature, art + design, collaging and crafts, fashion - japanese silouettes, spanish designers, stussy, tank air, vintage, etc., love to listen to erykah badu, kelela, andre 3000, pink pantheress, robert glasper, olddddd 90s and 2000s r&b and pop, jazz, reggae, jordan ward, sasha keable, some LA kind of ambient type music, im still partial to some olddd emo music too, im studying herbal medicine online atm, ive grown up with knowledge of nutrition and the natural world.

im also into policy and access, disability justice, i love restoring / collecting / selling mid century furniture, love a bit of space age furniture, collecting physical media, going to galleries and museums, trying foods, gigs + events like touching bass or jumbi in peckham, festivals (WOH is great), a nice girly yap over some wine sitting outside, i love beautiful spaces - modernist architecture, etc.

i love travelling (havnt got to do so much of it recently because i recently had a surgery for a chronic illness so this years been very very slow) and im coming out of this period of my life post surgery having been inside resting and taking it easy so much, but i have so much energy now and im really wanting to celebrate life!

feels like everyones winding down for summer now / has plans. and im realising how much i miss having those close friends that we can just go out together and have a really fun time, where we have sleepovers, make dinner for each other, go on trips, etc. i think also being in a relationship for so long has kind of created some distance within some friendships, others weve just grown apart or we all have our own things going on, but id really love to find that again. i feel like im a really good friend, i try to be kind and thoughtful, i have ADHD and i have very strong opinions and care about social justice, i love to have a laugh and just be silly, but also the kind of person who will show up for you, me in a nutshell is warm and kind but takes no shit.

if anyone else feels similarly and feels like we might connect, comment or send me a message, ive never done anything like this before haha but i feel like its hard making and keeping friends in your 30s and i really want to just put myself out there more.

excited to hear from you!

xxx

4 months post surgery, 7 weeks on tirzepatide (2.5mg) i am SHOOK and how painless and easy this menstrual cycle has been. this is crazy because im so used to being completely flat out and in agony every period, unable to move, i am genuinely so surprised but SO HAPPY.

(also, my acne has improved significantly on tirzepatide + from using azealic acid, and i've already gone back to my 'normal' looking self in terms of inflammation etc. its also a lot easier for me to bounce back from flares these days)

i have cramps today on my period but they are SO MINOR i imagine this is what it feels like for someone without endo?!

i just wanted to share the good news because it can be so consuming focusing on the negatives and things you want to improve, but i genuinely cant believe it.

if you've been thinking about GLP1 usage for similar issues, i'd really suggest doing your research and looking into it. i felt the inflammatory benefits instantly (for context i also have an undiagnosed insulin problem / possible PMOS so this affects my overall picture too, but this has worked miracles for me)

big love to everyone x

4 months post surgery, 7 weeks on tirzepatide (2.5mg) i am SHOOK and how painless and easy this menstrual cycle has been. this is crazy because im so used to being completely flat out and in agony every period, unable to move, i am genuinely so surprised but SO HAPPY.

(also, my acne has improved significantly on tirzepatide + from using azealic acid, and i've already gone back to my 'normal' looking self in terms of inflammation etc. its also a lot easier for me to bounce back from flares these days)

i have cramps today on my period but they are SO MINOR i imagine this is what it feels like for someone without endo?!

i just wanted to share the good news because it can be so consuming focusing on the negatives and things you want to improve, but i genuinely cant believe it.

if you've been thinking about GLP1 usage for similar issues, i'd really suggest doing your research and looking into it. i felt the inflammatory benefits instantly (for context i also have an undiagnosed insulin problem / possible PMOS so this affects my overall picture too, but this has worked miracles for me)

big love to everyone x

hey all! im thinking of biting the bullet and starting dienogest, i dont really want to take something hormonal tbh but the research on how it shrinks endo lesions is just incredible and i really wanna do everything i can to look after myself and get my life back.

i also have hair loss on my head in the hormonal pattern, severe acne, and i was gaining weight without the ability to control it, i have facial hair too.

i already take 2.5mg of tirzepitide which has helped so so much with my general bloating and weight gain, my face and body had become unrecognisable and i was just looking so unwell all the time - puffy and pale. its also helped reduce my period pain which is fantastic.

i've asked my doctor to help with the acne but theyre not really being supportive about it, its kind of useless, i cant afford to go private (i live in the uk). i wanted to go on spironolactone but they wont prescribe it to me, they said i have to see a specialist for that. i think i have PMOS but im hitting a wall with investigation so it kind of feels pointless.

i had excision surgery about 4 months ago for endometriosis, and during my follow up appointment the doctor suggested dienogest.

i've thought about it for a few months now, and i think its looking like a good option, i heard it can also help with the hormonal symptoms im experiencing too.

anyone else taking dienogest, and having a good experience? especially if you also hav e hormonal stuff / PMOS going on, how did you find it?

Thank you! <3

i have been begging my GP to give me testing and to refer me to an endocrine specialist, the blood tests they've done show up what they consider 'normal', still havnt done a fasting insulin test though.

i have PCOS / PMOS in my family, as well as diabetes and other endocrine issues.

i dont have visible cysts on my overies from a scan, my period is pretty regular, i miss a period every year but aside from that its usually always arriving around the same week.

i have hair at the sides of my temples thinning, i have worsening acne, really oily skin, intense pores and texture, so much scarring, my skin is literally ruined. i also have a moustache and chin hairs that i bleach / remove, i have always had sensitive blood sugar, i have dark skin around my groin and underarms which i wasnt aware was also a symptom. i had been steadily putting on so much weight and unable to lose it, and especially around my stomach. i've tried everything topically but it doesnt help or make a difference, tretinoin just made it worse so i stopped.

for context i also have endometriosis hence im here on the sub!

ive been using minoxidil for my hair and that seems to be helping, ive been on 2.5mg of tirzepitide and that has helped me INCREDIBLY with the massive amount of weight id put on, but i dont see a difference in my skin yet (its only been 5 weeks though).

my GP has done the endocrine referral but they said it's possible it will get rejected cos we dont 'have enough evidence' even though she acknowledged that i have all the symptoms of PMOS, but no result on a blood test.

im losing my fucking mind, especially about my skin, my skin is getting ruined every day, im 31 F, i have lost so much time to being unwell (with endo) and i had surgery in march and i just really want to be able to at least enjoy SOME of my summer, my symptoms are slowly feeling better but i just still find it so hard to look in the mirror, my whole face is covered in dark scars and texture and the acne keeps coming.

i hope this is received in the genuine way i mean it because i find it awkward or uncomfy sometimes to talk about 'looks' but i used to get scouted for and asked to do bits of modelling here and there, i was never reallllllly into it but i did like to do bits when it felt right, i used to be really confident in how i looked, and genuinely i just feel really disconnected from my body because of these health issues, i hope it doesnt sound vain but its one thing to be really struggling inside, its another kick in the teeth to also have your appearance completely change, it just makes me sad.

any advice on how i can push for whats happening to me? should i go ahead and take a myo inositol pill myself without waiting for the diagnosis? is it possible to get spironolactone on the nhs WITHOUT a PMOS/PCOS diagnosis? anyone got any words of support or understanding whos been in this situation? im losing my mind trying to figure out what to do!

thank you for listening xxx

hey everyone,

i am diagnosed endo and undiagnosed PMOS (blood work comes back 'normal' yet i have all the symptoms and it runs in my family) no help from doctors and cant afford to go private.

i have recently (a couple of weeks ago) started tirzepatide (GLP1) for my endo pain and for the weight gain that i havnt been able to shift, and oh, my, god. i have already lost weight, the inflammation has been instantly helped, and i think it will only get better from here, its incredible. pain also reduced a bit already. im not sure if its going to help with my other symptoms though (hair loss + acne)

i still have really intense acne, the texture of my skin is really really clogged and bumpy, and my general skin is just awful, with no signs of it slowing down or getting better. and my hair has been falling out loads.

doctors just say i should go on the pill but i really dont want to do that, i have a history of mental health struggles and it doesnt feel right to just jump to taking the pill straight away.

id love to know if anyone has any specific supplements, medicines, treatments, anything that really helped with their acne + hair loss. maybe i need to give the tirzepatide more time? i think i should probably look at inositol as well but im not sure which one to buy. but anything at all, id really really appreciate hearing your experiences, before i do the pill which is really a last resort for me.

lastly, the one 'pill' i might be drawn to is dienogest, because of its active help with reducing endo tissue growth, and i know for some people it can help with acne + hair loss too, but i wonder if anyone here has had that experience? as its not primarily used for that.

thank you so much community ❤️

i saw something on tiktok about mckenzie having a sister and how they took away her bedframe and wont let her out of the house and laugh at her, and that mckenzie is the golden child. does anyone know anything about that or can direct me to more chats about it on here, i searched and couldnt find any mention of it? it was so chilling, and when i saw photos of her sister i just felt for her, its scary, i hope shes okay. from the sound of the tiktok it sounded like theres a narcissistic abuse dynamic happening in the family, its very typical of familys where narcissism is rife. there is a scape goat child and a golden child, where the scape goat gets bullied by the parents and the other sibling (s). honestly its really gotten under my skin and its so horrifying, if anyone else has any info on this let me know please

ive read so much about tirzepatide being helpful for endo symptoms, pain, PMOS (formally PCOS) but im not working currently due to my illness and i cant afford it. wegovy is a much more affordable option, but i dont see as many success stories or chat about it in general? anyone here its worked well for?

ive gone up 2 dress sizes so id like to lose some weight, but id also like the benefits of managing endo symptoms and my PMOS which im absolutely sure i have but my doctors are being very slow and unhelpful with diagnosing it.

ive been offered wegovy at a starting dose of 0.25mg

any help or info would be so so helpful! thank you x

hey all <3 (IF YOURE IN THE US TOO ID LOVE TO HEAR YOUR THOUGHTS IF YOU HAVE EXPERIENC WITH THIS!)

i'm 9 weeks post excision surgery, based in the UK, and i've been seeing so much amazing information about GLP-1s microdosed for inflammation and managing endo symptoms, and also PMOS (formally called PCOS).

for context: i have chronic pain and all the classic endo symptoms, but i've also got hair thinning in the hormonal areas, worsening acne, and i've gone up 2-3 dress sizes in the past 6 months. my doctors have been pretty dismissive about the PMOS side of things and i'm still waiting on answers, so i'm trying to take things into my own hands a bit, i just can't keep going like this.

in the UK, GLP-1s aren't something doctors will prescribe for these conditions easily, and going fully private is really expensive, especially when you're out of work (which i am, my endo got really bad before surgery and i'm still recovering, hoping to get back to work in the next few months).

i've been offered tirzepatide through one of the standard weight loss services at a low dose (2.5mg), which is much more affordable, but i wanted to ask whether anyone has experience using it for endo or PMOS specifically? and does anyone have a sense of how soon post surgery is too soon to start?

any non judgmental advice would be so so appreciated, thank you in advance <3

hey all <3 (IF YOURE IN THE US TOO ID LOVE TO HEAR YOUR THOUGHTS IF YOU HAVE EXPERIENC WITH THIS!)

i'm 9 weeks post excision surgery, based in the UK, and i've been seeing so much amazing information about GLP-1s microdosed for inflammation and managing endo symptoms, and also PMOS (formally called PCOS).

for context: i have chronic pain and all the classic endo symptoms, but i've also got hair thinning in the hormonal areas, worsening acne, and i've gone up 2-3 dress sizes in the past 6 months. my doctors have been pretty dismissive about the PMOS side of things and i'm still waiting on answers, so i'm trying to take things into my own hands a bit, i just can't keep going like this.

in the UK, GLP-1s aren't something doctors will prescribe for these conditions easily, and going fully private is really expensive, especially when you're out of work (which i am, my endo got really bad before surgery and i'm still recovering, hoping to get back to work in the next few months).

i've been offered tirzepatide through one of the standard weight loss services at a low dose (2.5mg), which is much more affordable, but i wanted to ask whether anyone has experience using it for endo or PMOS specifically? and does anyone have a sense of how soon post surgery is too soon to start?

any non judgmental advice would be so so appreciated, thank you in advance <3

i had my surgery 6 weeks ago, still dealing with pain and a lot of fatigue, not done anything social really yet, aside from having my sister over to the house. i've also been on some short walks and for lunch / dinner a few times with my partner, pretty locally, and after doing these things i always feel really tired or have more pain the next day but its manageable.

im feeling like i really wanna go out and about again and see friends but im scared about getting on busy public transport, i know baby steps, but wondered if anyone else had been mostly house / sofa / bed bound for over a month? no one really tells you what you should be doing, so im trying to listen to my body, went for a short walk alone this morning and i think i'll keep doing more of that, as well as going on short trips to book shops or cafes or things alone, and see some friends doing something relaxing...

i'd just love to know if any others took 6 + weeks to resume 'normal' outside activities and stuff like that.

thanks ❤️

i had my surgery 6 weeks ago, still dealing with pain and a lot of fatigue, not done anything social yet aside from having my sister over to the house and been on some short walks and for lunch / dinner with my partner, pretty locally, and after doing these things i always feel really tired or have more pain the next day.

im feeling like i really wanna go out and about again and see friends but im scared about getting on busy public transport, i know baby steps, but wondered if anyone else had been mostly house / sofa / bed bound for over a month? no one really tells you what you should be doing, so im trying to listen to my body, maybe start doing some more walks alone and going on short trips to book shops or cafes or things alone, and see some friends doing something relaxing...

i'd just love to know if any others took 6 + weeks to resume 'normal' outside activities and stuff like that.

thanks so much as always <3

I've been dealing with endometriosis for years but the last 6 months or so have been a different level. My symptoms got really bad, I had to stop working, and I've just come out the other side of excision surgery. I'm mostly housebound right now which has given me a lot of time to sit with everything, and honestly I'm struggling right now!

I think for a long time I was so focused on getting the diagnosis, fighting for the surgery, just getting through it, that I didn't fully process how much this disease has taken from me. Now that I'm on the other side and supposed to be 'recovering', I feel the loss of it more than ever.

Work, basic exercise, income, energy, my social life, my sense of who I am and what I'm capable of, in the past 6 month it's all changed. I used to feel genuinely excited about my future. Right now it just feels dark and full of question marks about whether I'll ever be well enough to actually live the life I want.

I also have ADHD (currently on the NHS waitlist for meds, so not on anything for that yet), which makes the cycle of getting stuck and not doing anything so much worse. It's not laziness, it's just like I can see exactly what I want to do and who I want to be, and there's this wall between me and it that I can't seem to get through. Depression, anxiety, and ADHD together are a mix made in hell lol.

I've just been prescribed Fluoxetine 20mg (Prozac for those in the US!) and I'm cautiously hopeful, I did a lot of research before asking for it and it feels like the right fit for my profile. But I'm just curious whether it's helped anyone here in a similar situation?

(For context too, I used to be on Citalopram many many years ago, but the reason I chose a different antidepressant is because I've been dealing with other hormonal symptoms like hair loss, acne, weight gain, and I read that Fluoxetine doesn't increase appetite. I also read that the affects lasts much longer so if I forgot to take it one day I wont get that horrible zappy feeling, potential increased pain perception(not entirely sure if thats a good thing or not yet) among other reasons!)

Does any of this resonate? I'd love to hear from anyone who's been through something similar, especially wondering if meds helped you feel more like yourself again, more able to function, what specifically it helped with if anything relating to your endo?

Also, has anyone navigated the specific grief of losing your sense of self and your future to chronic illness / has anyone found their way back from this, what helped?

Sending love and thanks to everyone in this community. This disease is brutal, but feels that much better chatting with you all! <3

I'm about 5 weeks post excision surgery and still in recovery, and something has been bothering me that I wanted to bring here and ask if anyones experienced similar.

A close friend called me recently (her first call since my surgery) and I was genuinely looking forward to it. But as the conversation went on I started to notice that her questions were getting very specific, and I slowly realised they weren't really about me. She'd been researching endo and had started to wonder if she might have it too, and she essentially wanted me to help her work through her symptoms.

The week before this call I had told her directly that I was in a sensitive place and didn't have the capacity for anything heavy or intense right now. To me that feels like a pretty basic thing to ask for, I'm wrapping my head around having a chronic illness, my whole life has changed, I'm unable to work, I'm still in pain, still trying to rest and heal. And yet here I was on what was supposed to be a supportive catch up call, being asked to analyse someone else's symptoms.

Her symptoms, when she described them, sounded like pretty standard PMS - tiredness before her period, some light cramping and nausea, emotional shifts. She said it's mainly like this when she's stressed. When I asked her directly whether her symptoms get in the way of her daily life, she said no. Obviously I want to be careful here because we know better than anyone how dismissive the medical world can be, and I would never want to do that to someone else! But genuinely, nothing she described sounds remotely like what most of us have been through.

For context, she has health anxiety and a history of deeply spiralling over very small things - she once sat me down as if she had something really serious to tell me, I thought she was dying or something, and it turned out to be nothing. It's a pattern I've noticed for a long time. I think she also struggles to understand that normal periods come with symptoms too, and that symptoms alone don't equal a chronic illness.

What really got to me was the contradiction of it all. When I gently said I thought it was a big jump to endo, she initially agreed and backpedaled, but then a day later she was doubling down in long messages and voice notes, saying that she'd spoken to a colleague with endo and kind of trying to defend herself that she could be right. It just felt like she kept coming back and I had to keep holding all her feelings and thoughts as she spiralled when I genuinely didn't have the energy for.

I want to be SO clear here, I have so much love for the people who've shown up for me through this, and I genuinely love being able to support others going through similar things. Having a community of others going through endo means so much, I was kind to her throughout and I said what I thought as honestly and gently as I could. But I've had to tell her I need a few days of space and that I can't be her sounding board for this right now.

It just left me feeling so strange, like there was something almost competitive about it, like she wanted to be part of something that has really really broken my life apart. And I thought, you called your friend a few weeks after her surgery and spent half the call talking about yourself in this very specific context.

Also to add, even before she brought this up, every time we texted she would go on about how she was recovering from a cold/flu and how it was SUCH A HARD recovery, it felt very attention seeking and competitive, like she HAD to mention it every single time. I know she doesn't do it maliciously but when you're bed bound unable to walk and she knows this, it feels a bit icky.

Has anyone else experienced this? Friends, family, partners, anyone who has latched onto your illness or used it as a springboard for their own health anxiety? Did it feel competitive?? And how do you handle people like this without completely shutting them out, especially when you love them?

I hope this message is read with love and my intentions as they are genuine, thank you!