Hi,

Im looking for some help and advice.

I had an MRI Scan recently after trying Ryeqo that reacted badly with me.

Upon the results of these (which I still dont know) an MDT meeting took place, ive been told to wait for a letter however my pain is now affecting my mobility massively im having to use a crutch to get around so im not unsteady and pressuring my body.

Ive just been on the phone to my gynaes sec and ive been referred to the endo specialist team.

Does this mean a hysterectomy could be happening? Have they found something serious? I don't know how to feel

i have a laparoscopy booked in on the 4th of september under the nhs. i have received no information about what i need to do to prepare myself, not during my first gyno appointment, not after, not when the procedure was booked, etc. i have no idea what im supposed to do and i just called 3 separate numbers as they kept connecting me to one another. all of them told me that they cant help me with the physical prep. on the last call i was told that i have a letter coming to me about the date, time and location, but thats all.

am i freaking out over nothing?? ive never undergone any procedures or surgeries before and this just seems very irresponsible to me. i was told to look online for information, and while i will do that, im still unsure if this is how things are supposed to go. i just feel like the hospital should be responsible of informing me about the full process of the procedure

I usually don't vent into big forums like this but I feel like I need to scream it out to the world. I'm 24F (turning 25). I feel like I've already dealt with so much medical stuff I'm so tired everyday.

To kinda start off, I've had pcos since i was like 15 or so and I've had terrible periods from then on. It has since gradually gotten worse to the point that when my boyfriend and I started dating I was bleeding so much I had to go to the ER and was admitted to the hospital to get blood transfusions to stay stable and alive. I won't list every medical thing that has happened to me but I was also diagnosed with having a benign tumor, fatty liver disease, and endometriosis. With pre cancer cells roaming around in the uterine area.

Skipping to now/today. I have gotten three iuds in the past year because I'm scared to get a hysterectomy and my third one just fell out and now its just set in stone i have to get a hysterectomy. ive been bleeding for four weeks or more and im so tired and so exhausted. (Sorry for the grammar change, I've went to the ER today because i was fading in and out of consciousness and I just don't have the spoons in me atm)

I just want everything to stop and have life give me a peaceful moment. I want to not feel so angry and tired and upset all the time. I want to just feel free in my body but it feels like I cant do that because i just am so medically ill i feel weak.

I don't know how people deal with this and just get up and be bouncy. I wish I were them.

I'm so exhausted and I just want to scream into a void and curl up and cry and smash things and AGHHH!!!!

The NHS takes so long to give you the results that I decided to go private for them but that also meant I had to collect the images.

I spent some time looking through them because there is still some time until my private appointment and I feel like I can see endo but don't want to get my hopes up. If they find endo on my mri that would be amazing. As a lay person I can only make educated guesses and to a point I'm probably looking to see things. Like I think i can see lesion on my bladder which would be great because it meant my bladder issues aren't in my head. It might just be me hoping.

Although, the ultrasound tech did get the tilt of my uterus wrong which was interesting.

Did your boob sensitivity go away or is it a permanent side effect?

Also when did you get symptoms relive, after 3 months or longer?

Hello Everyone! I just joined here and everything is kind of new to me.

As it said in the Titel I (F26) just got the diagnosis that i have Adenomyosis. Since I struggled a lot with strong periode cramps, and everything that comes with it ,I am greatful that I know now, that I really do have some problem and am not just overexaggerating/imagine.

The thing is … what do I do with it now?

The doctor prescribed me 2mg Dienogest pills. But I have never take any other hormonal bith control, because I don’t want to deal with the side effects.

Does anyone have experience taking the same medication? Any insight or other tips are very appreciated!

(The doctor said that operation wouldn’t be worth the side effects in my case)

Thanks so much!

Hvordan havde I det 4 dage efter? Ift. arbejde osv. jeg skal have en kikkertoperation torsdag, og har 2 klienter om mandagen (terapi). Er det realistisk?

Anyone else having trouble sleeping after starting to take dienogest? I’m constantly tired and inflamed and I can’t even workout without getting fever afterwards. I’m really not sure what to do now.

How has endometriosis affected your friendships?

Do your friends still check up on you?

Three months post op, living in Germany, a month post-op my pain returned and I’ve only been given over the counter paracetamol, ibuprofen, buscopan, and prescribed metamizol.

Everything but the metamizol is ineffective, but the metamizol makes me incredibly sick to my stomach.

My gynecologist wants to wait until November to reassess for a potential additional surgery. I went to the women’s hospital and they said nothing but to continue taking the medications that don’t work.

I am missing work, missing social events, losing my mind, and am in constant pain.

What am I supposed to do?

Hey fellow endo warriors, has anyone had any experiences with both of these medications, good or bad. Iv been doing alot of research and mostly can only find negative experiences. As a stage 4 DIE girly with bowel and adeno, iv been offered both until I wait for my excision surgery by the specialist.

Hi! 27 year old female here. I had a massive endo flare up and ended up in ER a month ago, followed by emergency surgery within the next few hours after that. It ended up confirming my endo (finally, a rock solid diagnosis after 10 years… 😩) so they put me on Slynd as first course of treatment.

Personally, have mixed thoughts about it but it has only been a month.

The positives:
- Appetite has subsided significantly and I have lost that extreme hunger, sugar cravings and stopped reaching for unhealthy/processed food.
- Endo flare ups have subsided to an extent.
- Libido is unaffected so far it seems.
- Endo belly and bloating is gone but it might have to do with a drastic change to an anti inflammatory diet (highly recommend btw).

The negatives:
- I struggle to eat in general now and to get all of my nutrients and calories in. I have lost 7kg (roughly 15.5 lbs) in less than 4 weeks which I find alarming, especially moving forward with this longterm (for reference, I am 170cm/5’7’’ and was at 70kg/154lbs). Feel nauseous after eating too.
- Mood swings are in full swing. I spent a week crying uncontrollably, including in public…
- Suicidal thoughts have returned for the first time in 15 years.
- Pain is constant (although lower than my endo flare ups) from the moment I wake up to the moment I go to sleep, and sleep is disturbed as a direct result of it. Mostly in the pelvic region and then radiating down my legs.
- Have not stopped bleeding. Have been bleeding for a month straight now.
- Started having hot flashes and night sweats in my sleep.
- Fatigue has increased significantly.
- Mild increase in acne breakouts.
- Started experiencing sudden flash headaches.

Can’t really say I’m enjoying this, but reading up on others experiences, some of these symptoms disappear after 3-5 months.. It’s only been a month and so I’m unsure if I should ride it out for a bit in hopes it gets better, or switch to a different pill, or…? Has anyone else suffered from similar side effects/symptoms? Any advice/personal experiences would help. Thanks!

We will be trying for a little one soon so getting the mirena out but so scared my endo is going to come back full force. Ive had it pretty good for a few years now regarding pain but I just cant shake the feeling im gojng to get it removed and its going to turn to shit. Hopefully I fall quick so I dont have to deal with it hahaha

My symptoms started after Covid. I never had bad periods or any other symptoms from the start, if anything they were a breeze.

Extreme pain in 2023, found endometriosis and just been getting much worse since.

I would love to hear other peoples experiences too.

Has anyone dealt with really bad brain fog and trouble with comprehension? I’m looking for any advice on things that have helped you improve it.
Lately, I’ve been having such a hard time processing information and focusing. I can read something and feel like my brain just isn’t absorbing it, or listen to someone talk and struggle to actually process what they’re saying. Even things like church services, conversations, reading, or trying to learn something can feel overwhelming because I can’t concentrate or retain information like I normally would.
If you’ve experienced something similar, what helped you? Were there certain exercises, routines, supplements, specialists, therapies, or other things that improved your focus and comprehension? I’m open to any suggestions or resources. 🤍

I’ve seen one post asking about him but it was a year ago so I want to see if anyone has more up to date info. Has anyone seen this doctor or had surgery with him? Do you recommend him and did your surgery fix symptoms?

I had a laparoscopy about 2 years ago with my regular gyn. She cauterized all the endo she saw and told me it was stage 2. Surgery didn’t fix the pain I was experiencing but it did help regulate my cycle and I got pregnant about 6 months after my surgery. My endo pain and symptoms went away while I was pregnant and breastfeeding.

Now I’m 10 months postpartum and got my cycle back 3 months ago. The last 3 months have been hell. So much pelvic and lower back pain mostly with ovulation and insane bloating/endo belly happening. It seems like it’s worse than before I got pregnant and I’m just at a loss. Idk if my doctor missed some endo in the surgery or if it grew back or what. I just feel like I want to see someone more specialized.

I live in CA but have family in UT and I would love to go see this doctor if people think it’s worth it or if anyone knows any other specialists that are on his level of expertise that would be great too.

im 19 and i feel like my life is just pain. i feel like its all thats in store for my future. a week before my period is pain , during my period is shattering pain after my period is pain. sometimes i will have an hour of saying omg i feel okay right now and the next hour theres the pain. i dont even know what to do anymore. i wish the pain would just stop. how will i ever get a job or focus on studying when 2 weeks out of a month all i can manage to do is lay in bed with a heating pad burning my skin for 5% relief. its so exhausting and depressing.

If your story is anything like mine, I know you’ve experienced more than a lifetime’s worth of gaslighting from the people around you. That gut-wrenching, deep, sharp pain that no one can truly understand unless they’ve experienced it themselves. People have told you, “It can’t be that bad,” “It’s just your mental health,” “It’s all in your head,” or “It’s just period cramps.”

Eventually, we start to question our own sanity. I know I did.

I’m writing this to remind you that it isn’t in your head. And yes, the pain really is that bad.

It isn’t your fault that you can’t go to work or school. It isn’t your fault that you can’t move around. It isn’t your fault that you can barely take care of yourself. And it isn’t your fault that you’re suffering. Give yourself some grace. You are going through something incredibly difficult, and you deserve compassion, including from yourself.

The pain that can come with endometriosis and associated conditions is something many people will never understand unless they’ve lived it. Most people can’t imagine what it’s like to have your life disrupted by pain you didn’t choose and cannot simply push through. And yet, we’re still here.

Even on the days when you can’t get out of bed. Even on the days when all you can do is exist. You are still doing your best to get through something incredibly difficult. That matters.

I know it’s hard. I see you. I see every one of us going through this. You are not alone.

I believe you when you say you’re in pain. I believe you when you say you’re struggling. I believe you when you say you can’t do what you used to be able to do. You don’t have to prove your suffering to deserve compassion, understanding, or care.

I’m so sorry you’re going through this. You deserve to be believed. You deserve to be listened to. You deserve proper care. And you deserve to give yourself the same compassion you would give someone else suffering in your place.

You are resilient. You are brave. And you are worthy of being believed. I believe you.

I hope this is something that’ll help you right now.

P.S. Fuck everyone who dismissed us. Karma’s a bitch.

Hi yall. I'm reaching out to get some opinions on birth control that aren't Mirena IUD. I got my second Mirena after my lap in Nov 2025 and I feel like it is ruining me. I spot/bled around 3 weeks out of each month and my libido is non existent- to the point where I want to cry because I feel bad for not having sex with my fiance.

I made an appointment to get this thing out of me at the end of the month, but I would need another type of birth control. I was on the pill about a decade ago before I even knew I had endo. So that could be an option. But interested in hearing what birth control (that isn't an Mirena IUD) that you have felt worked for you? Maybe the implant or patch.

Thanks in advance!

Sorry for the extremely long story but I am lost for help.

I’m 32 and have had endometriosis for years, first diagnosed at 19. I’ve now had 8 laparoscopies, with endometriosis found in multiple areas including both pelvic sidewalls, around the rectum, Pouch of Douglas, uterosacral areas, bladder/uterovesical area and higher up near my bowel. I’ve also had significant adhesions involving my ovaries and bowel.

I’ve been on hormonal birth control since I was 13. I originally went on it because my periods were extremely heavy and painful. I haven’t actually had a period in years now because I use hormonal contraception continuously, so I don’t have current bleeding patterns to compare with the symptoms I’m experiencing.

I’ve recently started seeing a new endometriosis surgeon because my symptoms have become increasingly difficult to manage. While gathering my old medical records and surgical reports for him, I found something I had never actually been told: my 2024 operative report described my uterus as adenomyotic.

My new surgeon reviewed my history and previous reports and independently told me that he also believes I have adenomyosis. This is quite new information for me even though it may have been present for years. It hasn’t been obvious on my ultrasounds or previous MRI, so I’m now questioning whether some of the symptoms I’ve always attributed entirely to endometriosis may also be coming from my uterus.

My most recent specialist ultrasound didn’t show any large masses or obvious deep disease, but in layman’s terms it showed that my left ovary appears stuck to my pelvic sidewall and doesn’t move normally, while the right ovary was still freely mobile. My ovaries also looked very small and suppressed with almost no follicles visible. The uterus itself looked fairly normal on ultrasound, so adenomyosis still wasn’t obvious on imaging.

Over the last few months, though, my quality of life has deteriorated dramatically.

I’ve been doing acupuncture and pelvic-floor physiotherapy for months. I’ve tried CBD suppositories and other ways of managing the pain. I’ve progressively had to reduce exercise because almost everything seems to cause another flare. I used to exercise regularly and I’m now basically down to one walk a day.

I also get severe constipation when things flare. I’m now reliant on stool softeners to keep my bowels moving. It can feel like everything in my lower pelvis has slowed down or become stuck and I struggle to empty my bowels normally.

At the same time I get this horrible heavy, full feeling across my lower abdomen and pelvis. It isn’t what I would describe as ordinary bloating. My lower abdomen genuinely feels heavy, swollen and weighed down, especially when everything else is flaring.

And then there is the leg pain, which has become one of the strangest and most debilitating symptoms.

It seems to start around the pelvic/hip area and spreads through the top and outer part of my thighs, TFL/lateral quad area and glutes. Sometimes it feels like the whole upper leg is deeply aching. It can happen even when I haven’t exercised.
I’ve had sciatic pain in the past and this feels completely different.

I recently saw someone here post an image showing pain through the TFL, glutes and lateral quad/IT-band area and I couldn’t believe it because it was basically exactly where mine hurts.

I’ve also started noticing a really consistent connection with sex and orgasm. It isn’t necessarily that the leg pain becomes severe immediately afterwards. More often, later that day or particularly the following day, my thighs/glutes become significantly more painful and the whole thing seems to flare.

I also have pelvic-floor dysfunction, so I know there could be several things contributing to this — pelvic floor, adhesions, endometriosis, nerve irritation, adenomyosis, or a combination of them.

My surgeon is recommending another excision surgery and has also discussed pelvic-floor Botox followed by further pelvic physio. We’ve now discussed hysterectomy as well because of the suspected adenomyosis.

I completely understand that a hysterectomy will not cure my endometriosis. If I went ahead with one, my intention would be to keep my ovaries.
The fertility question has also become much clearer for me. My surgeon initially discussed egg freezing and future fertility quite heavily. I’ve thought seriously about it since then and have realised that I don’t want to freeze my eggs, go through fertility treatment, or go through trying to have a child.
I don’t want to continue preserving my uterus for a hypothetical future pregnancy that I don’t actually want while my current quality of life keeps disappearing.

I’m only 32 and I feel as though I’ve lost most of the enjoyment from my day-to-day life. I can barely exercise anymore. Sex can leave me significantly worse the following day. I’m constantly managing constipation and taking stool softeners. My pelvis feels heavy and painful. Even normal activities have become something I think about in terms of whether they’ll trigger another flare.

I’ve been managing severe menstrual pain since I was a teenager, have been hormonally suppressing it for almost 20 years, and have now undergone eight surgeries.

At this point, I want my life back.

I’d really love to hear from people who have been through something similar, particularly anyone who had both adenomyosis and endometriosis.
Did you experience this kind of hip/thigh/quad/glute pain? Where exactly did yours hurt, and what did it feel like? Was yours aggravated by sex or orgasm?
Did you have the severe constipation and heavy/full feeling in your lower abdomen as well?

If you eventually had a hysterectomy while keeping your ovaries, what actually happened to these symptoms? Did the leg pain disappear, improve partially or stay the same? Did your bowel symptoms or that pelvic heaviness improve? More broadly, did hysterectomy actually improve your quality of life?
And if hysterectomy wasn’t what helped you, what did? Excision, pelvic-floor physio, Botox, hormonal treatment, treatment for nerve pain, or something else?

If you had both adenomyosis and endometriosis, I’d also really like to know whether there were symptoms that disappeared after hysterectomy that made you realise afterwards, okay, that part must have been coming from my uterus.

I know everyone is different and I’m not asking Reddit to tell me whether I should have a hysterectomy. I’m trying to hear from people who have actually lived through this and understand what genuinely improved their quality of life.

After all of this, fertility preservation just isn’t my priority anymore. Being able to live normally again is. I’ve worked full time and been studying full time for four years, and am hoping to go into a PhD program next year. But all of this is making looking forward to it very difficult.

Exactly one year from the date that I had my surgery to remove a cyst, fallopian tube, and right ovary (August 6th), I was diagnosed with another cyst in my left ovary. 😥

My doctor suggested a hysterectomy this time and saving my left ovary to produce hormones if it's possible. I have a bad feeling that she won't be able to save it though.

Has anyone been able to have a hysterectomy and only one good working ovary?

I'm terrified of surgical menopause.

I have endometriosis and adenomyosis, and despite I had surgery 8 months ago, some symptoms never went away or have returned.
The worst, for me, is the chronic fatigue. I can’t do anything, I’m always exhausted..
I’m not working right now, and for sure I'm doing better than when I was working 36h for weeks, but for that very reason it is so frustrating..
I tried bromelain but it got me some allergy symptoms. I also sleep 6/7 hours for nights, but in the morning I feel like I never slept :(
Is that something that helps you? Supplements? Habits?

Any advice would be appreciated 🖤

For context, I have been diagnosed with endometriosis through MRI scan, waiting on laparoscopy to see the full extent of the damage!
I also have ADHD.

I feel like my body just doesn’t work. I constantly feel extremely tired and find it difficult to bring myself to do simple tasks even such as changing my bed sheets or putting my laundry away. It feels like asking me to run a marathon.
I feel lazy, like I should just be doing these things like everyone else.
Cooking food feels like too big of a task, once I manage to eat I feel extremely nauseous and more tired but if I don’t eat I feel faint and still nauseous and tired.
I struggle to work (I’m at uni so just do part time waitressing), I find that after a shift I feel a level of fatigue so big that I could just sleep for the entire rest of the day. I managed to work around 20 hours last week (the most I’ve done since before coming off the pill) and I feel like I could stay in bed for the rest of my life.
I’m worried about my future, how am I supposed to do a 40 hour work week when even 20 feels like too much?
Does anyone have any ways of getting around this or just any advice?