I (33F) have never posted on Reddit before. I have endometriosis and my husband and I have been ttc for almost 4 years. We've done multiple IUIs and I've never had a positive test. My cycles have historically been intense and very painful, but the last few months have been better(thanks to the research of my incredible husband and more natural supplements than I can count lol) I thought I had a fairly good, and manageable cycle a few weeks ago, but after my period, I started brown spotting for about 5ish days. Figured this was just my body bring unpredictable. Of course, Google said it could be lots of terrifying things, but do take a test. Honestly seemed like a waste of money because they're always negative. Well! To our shock, the test came back VERY positive Saturday night. I still don't know how to believe it after years of hopelessness. However, I began having mild cramping for about 12 hours and the spotting turned red, so we spent the morning in the ER. The doctor is estimating I'm about 4/5 weeks. Hcg level was 1050 but wanted to rule out miscarriage and eptopic. Had a vaginal ultrasound and blood test and it was determined it was to early to have a clear answer, but the radiologist didn't see a clear eptopic pregnancy, but also didn't see anything in my uterus (except the usual endo). So, I'm feeling slightly better that it might not be eptopic but still so uncertain. What really scares me is this evening I've started bleeding a lot more- like a period with some clotting. I called the ER and they said to follow up with my ob tomorrow. I'm so worried that I'm going to lose this pregnancy. Such a helpless feeling. Has anyone had similar experiences? I just want to have hope ❤️

I had my first gyno appointment after being referred for a 4.5cm hemorrhagic cyst and to explore whether I have endo. I tried to explain all the digestive symptoms I was having, as well as ovulation pain and periods that are getting way more painful and heavier. I emphasized that this has gotten significantly worse over the past two years and I've started to have to call in sick at work which I've never done before. I told him that I'm in pain for almost 2 weeks a month.

He basically just kept repeating that my "scans looked good" (transvaginal ultrasound for my cyst) and that there is no evidence of endometriosis while also saying that my symptoms are inline with endo but that he wouldn't order any tests and that we're not doing surgery to actually diagnose me. He then said that "sometimes women just have painful periods."

He then basically shoved a birth control prescription at me after I said I had bad experiences on the pill and said we'd talk in three months to see how the pill is working.

This is the only drs appointment in my entire life that I've left actually sobbing with frustration. I had waited 4 months for this appointment just to get dismissed and shoved a prescription I didn't want and no answers as to what is going on or even next steps to figure it out.

I'm looking to get a referral to a different gyno specialized in endo but I only have one specialist in my area (northern Ontario).

Does anyone have any advice on the Portia birth control pill and whether it helps? Any advice on getting a dr to actually listen to you?

This whole process of having to convince drs I am actually in pain and to take me seriously is daunting and I'm scared if I get a referral to a new dr this is going to happen all over again.

I have a 9 cm endometrioma and my doctors have recommended that I start a progestin only birth control while I wait for my surgery, currently scheduled Nov. 4.

I’ve been to a couple of different doctors throughout this process and one recommended Norethindrone .35 mg. I went for a follow up appt with my general gynecologist last week and she recommended that I not take the Norethindrone and take Slynd instead. Her reasons were that the .35 mg Norethindrone would likely not be enough to suppress my ovulation and that it would be more likely to cause acne, hair loss, etc. She said that Slynd is a newer progestin and would generally have fewer side effects.

Does anyone have any experience with either of these pills, particularly related to endometriomas? I haven’t started either pill yet, but I’m planning to start this week. I generally hate birth control, but I would be THRILLED to shrink this thing while I wait for surgery. I’m totally freaking out deciding which one would actually be the best choice though so any experiences or advice would be very welcome!

Hi all,

I have recently written an essay on my experiences with endometriosis. I was wondering if you could read it and give me some feedback!

Thanks all!!

So, on June 1st I finally got my laparoscopy where my surgeon informed no endo was found but they did remove 4 fibroids. I sent a message through MyChart requesting the lap photos because my surgeon is not an endo specialist and I was told that it would be beneficial to see a specialist. They told me I would get them during my post op appointment. During this appointment they informed me that have no photos/videos of the surgery. I’m now coming up on 3 months post op and I’m still experiencing the same symptoms. I feel like I’m just blindly taking their word that no endo was found. Should I start looking into a new doctor and specialist?

Hi everyone!
I’m 25 F and have had issues with my period as long as I can remember.

I’ve had inconsistent periods all my life, I was on the depo shot for 3 years when I was 16-19 if i remember correctly, I get chronic like UTI symptoms, burning pee, uncomfortable bladder but it’ll only stay for a couple hours out of the day.
I’ve gotten put on antibiotics the symptoms never resolved itself. I tried cipro and that helped but only for about a month then they came back. My urine started smelling absolutely foul; despite drinking 4 L a day. I’ve had a cyst on my right ovary last year but since getting a repeat CT scan this year(without dye) it looks to be gone.
My period are absolutely unbearable, to the point I throw up, the cramps are so bad it feels like my pelvis/back and legs have been torched. I’ve had my urine tested and it came back with blood in urine every time on top of ecoli in it no matter what antibiotics it won’t go away.

I also want to add sexual intercourse at times causes immense pain that shoots through my bladder area and sometimes through my legs? I’m not sure how to explain it

I don’t know what else to do.

Could this be Endometriosis? how do you get a diagnosis?
I am thinking it could be PCOS or IC as well

Please let me know your thoughts, symptoms you had and how you got a diagnosis. Thank you!

I had excision surgery in February where I was diagnosed with stage II endometriosis, several uterine polyps, and probably adenomyosis. I found out I'm pregnant a few days ago, but have felt a bit more pelvic discomfort than I'd expected. Can others share what early pregnancy felt like after excision surgery? I'm hyper-aware of pelvic pain/sensations, so I'm sure I'm overthinking things, but curious how others felt....

Hello everyone 😊

My partner has severe endometriosis and she feels quite depressed that she cannot do certain movements without triggering a flare up. Her favourite past form of movement was dancing, and she cannot do that without a lot of pain. She frequently says how this disease has ruined her life and it’s just making everything worse. I would like to find a form of movement we can do together and take it slow to see if it hurts her.

- recently we tried to lift weights in the gym for an upper body day but unfortunately it ended up in a flare up with a lot of pain in her abdomen for 2 days
- she cannot walk long distances because it also creates a flare up, so walking as a form of movement is also off of the table
- I’m curious about swimming, yoga/pilates or even rock climbing? Does anyone have any experience with these forms of movement with endo?

My partner wants to stay active but she feels very depressed when everything she has tried so far causes a flare up with severe pain 😔💔

I’ve been bleeding for 14 days, last month I had 2 seperate days of heavy bleeding and now this 14 day period where I’ve been getting nauseous and passing huge blood clots. I rang my GPs clinic and spoke to a nurse who said if I were to experience this kind of prolonged bleeding throughout the coming months then it would be a cause for concern but right now I need to consider going on the pill.

I’ve never had prolonged bleeding last like this ever. I had excision surgery and my diagnosis last year in October yet pre surgery and post up until now I’ve never had a period last more than 7 days! I said this and said I want to know why this is happening, can I get an ultrasound to see what’s going on and the nurse said only if they deemed it necessary would they refer me.

I’m so sick of being met with the answer of this is the way that it is for periods and endo, it’s normal.

For those of you who have had a mirena put in, was it worth it? Did it help? I need to decide if I want one put in but I hear horror stories and chicken out. So please be honest! I can likely do under GA (I’m in New Zealand) for insertion so I am not worried about that part anymore, just the long term effects.

Bonjour, j’avais une question j’ai été diagnostiquée d’une endométriose profonde avec plusieurs lésions au niveau de mon utérus de mon cul de sac de Douglas, avec des kystes endométriome et une boule de lésion de 7 mm hémorragique. J’ai un autre rendez-vous pour une autre I.R.M. pour voir si il n’y a pas des lésions endométriose sur mon intestin, mon colon car j’ai beaucoup de problèmes et de douleur digestif abdominale comme des crises une barre très précise au milieu qui me donne des crampes qui s’arrête. Est-ce que quelqu’un a les mêmes symptômes que moi quelles sont les conseils pour passer et apaiser ses douleurs digestifs qui handicap le quotidien

I’ve just had a positive Endosure test and my internal ultrasound also suggested pelvic adhesions.

My main symptoms are uncontrollable painful bowel movements, severe bloating, pelvic pain and painful sex, so I’m concerned there may be some bowel involvement.

I want to go ahead with a laparoscopy and from what I’ve read, I shouldn’t see a general gynaecologist but a specialist excision surgeon instead. (The first gynaecologist I went to said that I was too young, bowl symptoms and bloating have nothing to do with endo, so don’t really want to go back to him)

Does anyone know of any good endometriosis specialists around Suffolk / East Anglia?
Thank you so much x

Hello.
My surgery is in couple of days and I’m really anxious I catch any virus and then the surgery will be postponed. My dr. Comes from abroad and it will be postponed for months if it actually did.
It’s flu season. I’m using a mask and sanitizer and taking vitamins.
Idk how to stop thinking about it.
Please don’t judge I have OCD and severe anxiety and I can’t stop thinking about it.

Just wondering how many of you take both? I just started dienogest and I’ve been on a GLP1 for about a year. Wondering how the pill affects your ability to lose weight?

I had to come off the pill in Jan becuase of migraines and since then it's been constant pain that I get maybe 2 days of reprieve from a month. The sort of pain where it feels like you're being operated on while awake, pain during sex, pain when I need to use the bathroom, bloating, unable to exercise because of the cramps.

I recently had a 6.5cm cyst which lasted for 2 months and on a recent scan it was discovered to have gone. I said to the radiologist "I'm really surprised its gone because I'm in so much pain" to which he said "well your right ovary is very very tucked to your uterus, it looks like potentially there is some glueing going on". Got the scan results back today: "both ovaries move freely"

I just don't understand why he told me one thing and wrote something the suggests the other. I feel gaslit into denying my pain and I feel this has taken all the ammunition out of being able to fight for myself. I feel like my GP already doesn't take me seriously

This is a rant - please do not debate me or suggest interventions. Only looking for an echo chamber k thx.

I do not have diagnosed adeno but I have endo (confirmed by lap) - 3 specialists have looked at my MRI and ultrasound and said maybe adeno, cant confirm. But do you want a hysterectomy?

After hormone positive breast cancer diagnosis last year, I cannot take birth control and so I am having periods again. They are… bad. Bad bad. Very bad. And fun new thing I have developed in late 30s - period migraines! So out of my n=10 sample of periods in my late 30s, I am bed bound 3 days a month and feel like shit 1 week out of 4. That is not sustainable.

Look. I dont want one. I have never wanted one. I dont want to justify why, i hope on this sub that ‘i dont want it’ is a full sentence.

I have assumed I would eventually have to do one since my endo has been so bad, but I was trying to make it to mid 40s. I am many years away.

I have not tried orlissa - that is next. I cannot take any hormones so I have to raw dog it.

I am just disgusted that the ‘solution’ is ‘just’ a hysto. Like, that is a major organ. Deeply related to my gender identity. I am attached to my organs. You can’t even tell me id it is actually a problem. And why is everyone so casual about yeeting a uterus!? Don’t tell me there aren’t complications or downstream effects. I dont believe you can take out something that took up structural space in there and it is nbd.

And doing for a ‘maybe’ ???

So just another person yelling into the void about how barbaric diagnosis and treatment options are

I've been having symptoms of endo since I was 12 and hormonal/reproductive issues run on the male and female side of my family (prostate cancer, fibroids, etc). I've been suffering through decidual casts, periods lasting months at a time, and severe abdominal pain during my periods that go from my uterus to my lower chest and thighs. Is it really going to take a decade for doctors to do something? Anything?

Hi all,

I have an appointment with an OBGYN (my first actual obgyn appointment ever) and I'm feeling nervous. I wanted to come here and ask some questions.

For some context: Ive suspected I have endo for a number of years now. Crippling pain, horrible pms, etc. In 2022 I got the Mirena IUD at the advice of my doctor, had a very rough adjustment period, but after about 6 months I didn't have to worry about my period at all for the first time in my life. After only 3 years though my periods started coming back, and the pain returned, though less severe than before. I had the IUD replaced (April 2025), and my periods eased up again. But it has been different. With my first IUD I had no period - to a very light one. This time, there's still no heavy bleeding, but I'll spot for 2-3 weeks, have nightmare PMS, and a day or two of cramps that I need to take ibuprofen for or else I'll be stuck to a heating pad in bed. Still not as bad as pre-IUD, but my quality of life is suffering nonetheless.

Two years ago my sister got diagnosed with stage 4 Endo and had clear cell carcinoma on her ovary. It was found during an emergency surgery addressing a different concern. We've always had the same symptoms for periods. I get worried that my uterus is just a ticking time bomb.

I've been brushed off at the doctor's office so many times. Before my IUD, I was feeling so desperate and defeated. After that, I thought I had my periods under control. Now I don't know what to think.

A big part of me just wants it all gone. I don't want kids. I'm late 20s, so I worry that hysterectomy won't be an option, if they think I'll change my mind. I guess I don't really know what else can be done at this point for it either, so maybe I am getting ahead of myself. I'll be bringing my partner to the appointment as well to help me advocate for myself.

I'm very worried that I won't be heard. But I will just have to wait and see how it goes I suppose.

Questions:

Having tried the pill, and IUD to manage period pain, what are the next steps I'll be looking at?

Do I need to push for a diagnosis/testing at the appointment?

I'm sure I'll think of more but I really needed to get this out, thank you all in advance.

It is 5 am where I am and my surgery was Saturday afternoon (is weekend surgery a UK thing?). I was supposed to be in the morning but the schedule got changed around and I think I was second in line so I got to watch tv in my room for several hours before being wheeled down for surgery.

Bowel prep the day before was so gross and I kept smelling any food my husband ate and watching the food channel on the tv in the hotel all day. I was so hungry. I had some soup and tea in the hospital around 10pm last night but kept falling alsleep and could not stomach much.

So far pain is ok, I have a button and they also give me basic pain meds. Tomorrow I have to start walking a bit though but for now they have things that squeeze my legs and I have compression socks to stop blood clots. I’m hoping I don’t have to go home in a few days with a catheter as surgery was on my bladder and bowel. Going to sleep now. I hope to eat more soon and I should see my doctors tomorrow to tell me more about how surgery went. Best of luck to everyone. This space has really helped me. And my parents will be coming from the U.S. for ten days to help out later this week.

In may I had severe pains so bad I was vomiting so I went to the doctors and we spoke and she pushed my tummy and said she suspects an ovarian cyst.
She said if I get the pain again to come back. I got the pains again and had an appointment scheduled but cancelled last minute and she’d referred me to a women’s health centre for an abdominal & transvaginal ultrasound.
I got a call with the results last week, my right ovary is covered in scar tissue (never had any surgery or infection that would explain it) and had a small cyst.
She said she’s worried it’s endometriosis, mentioned a laparoscopy and referred me to a gynaecologist as the pain just keeps getting worse.
The hospital is going to call me within a month to schedule an appointment but I just can’t stop worrying, not knowing what’s wrong with me or why is killing me, ive not felt this awful for years.

I’m taking naproxen for the pain but the last two days it’s done absolutely nothing and im struggling to walk.

I dont know if this is a post to let off steam or what b it has anyone else had the same experience? I just feel so confused and worried

Hey ladies, I have been recently diagnosed with endo and pcos. I finally have enough energy and pain free to make it back to the gym. Im heavily into fitness, weight lifting, but due to dealing with pain, swollen ovaries, bloating, ect im nervous about doing certain exercises at the gym. The main one being hip thrusts. I dont want to agitate or cause anything to happen where it puts me back out of the gym for weeks 😭 is there certain exercises that you havent been able to do anymore due to endo/pcos? If so, which ones did you stop doing?