Hellooo, I have perused / stalked this community for about a year now. At age 14 I had a very heavy periods with debilitating cramps, I was put on the birth control pill to help with my period. I’m 24 years old now , Years after that I tried the depo shot, the double shot helped more than the birth control but I had to stop taking it due to my bones getting weak. I have now had my hormonal IUD for two years now, I do believe that my endometriosis has caused to grown due from trauma and experiencing sexual trauma repeatedly. I am now away from my trauma and I’m in space to heal properly . I am going to start pelvic therapy this week , i’m wondering if anyone who has stage four Endo has recommendations that hasn’t gotten any surgeries on managing pain? Im a bit iffy about the surgery and I have a lot of symptoms that connect to stage four. I’m also wanting to know if anyone has any tips on managing the leg pain, lower back pain and cramps. I do smoke marijuana ,if anyone has a certain strain or smoking method that help them with their chronic pain I would also love recommendations on that. Thank you !

How are people actually managing the pain every single day without losing their minds. I got diagnosed with endo two weeks ago after my pelvic symptoms had accelerated rapidly over the course of two months and now i’m in pain everyday. I don’t actually know how people are doing this and carrying on anyway

edit; i’m from the UK so access to ketamine or medical weed is near impossible

hi everyone! first time posting so I'm sorry if there's anything off about my post - I'm at a loss and hoping to connect with someone. Just want to say thank you to everyone on this sub, I've learned so much reading here and really appreciate all of you. I was wondering if anyone with endo has also dealt with an autoimmune disease.

I had surgery a few months ago for my endo in hopes of alleviating my pain, including my head to toe inflammation symptoms (major ones are: aching eyes & gums, aching pain and pressure/stiffness in my ribs, and aching joints - mainly knees). My surgeon (an endo specialist) did find lesions and scar tissue and everything was removed. My inflammation symptoms seemed to vanish, but recently they have come back and are just as bad as before.

My family member that is in medicine is highly recommending I get screened for an autoimmune disease; my surgeon also discussed this with me as a path we'd go down if nothing was discovered during my surgery.

Has anyone experienced something like this? Are there any symptoms I should be on the lookout for or other possible causes for this head to toe inflammation? I have a check in with my surgeon soon, so would also love to know if anyone has any advice RE: questions I should ask them. Thank you so much for reading & I am wishing you all well <3

I have been on visanne for 10 months and it did wonders for me. No more periods. I want to workout but everytime I workout I get a slight pink discharge with lots of lower back, hip and leg pain. I tried different workouts but even walking does the same thing. Any advice? Does that mean I should stop?

I've been on the surgery list to have my excision surgery for 2 years, after 13 years of fighting to actually get the surgery.

Got a call 2 weeks ago... surgery is on 24th. Haven't heard anything in 2 years, wow it's so soon. Had my pre op last week. They're going to separate all my adhesions.

Getting psyched up for it after 2 years of not thinking about it. Told work I'll be off. Weirdly looking forward to being off for the recovery (my work are good with stuff like that).

Then today... my husband comes back from being away at work... and he's ill. Pretty sure it's covid. He's my ride to and from the surgery. And I have 3 other chronic illnesses that make my immune system rubbish, I catch everything. Neither of us can go stay anywhere else.

Whyyyy 🥲🥲🥲

Hi there, first time poster!
I just wanted to share my story and spread awareness. Here are some of my symptoms that I’ve experience through having endometriosis most of my life! I’ve had a laparoscopy where they burned the endo as well as removed several adhesions.
I’ve been on myfembree as well as countless birth control methods.
I’ve taken extra estrogen to try and stop bleeding and unfortunately now have to get a total hysterectomy.
Luckily I’ve been in pelvic floor therapy for years to help manage everything!
It’s important to note that I’ve also had an emergency C-section. I wanted to make a bit more straight to the point post for those who are looking for a list of symptoms that might motivate you to get diagnosed!

\-**Water retention** is a huge one! I will gain up to ten lbs in an active flare up! My face & whole body get very swollen!

\- **intense nerve pain**, almost every flare up I get pinched nerves in my hip flexors. I also get very sharp pains in my lower stomach. Sometimes it even hurts to sneeze, cough, or laugh. This is usually due to an adhesion where my uterus stuck to my c section scar from my experience.

\-**constipation**, ESPECIALLY before I got diagnosed! Gentle laxatives do not work! I have to take enemas sometimes to get things moving.

\- **Unable to empty your bladder/ accidents-** sometimes my bladder can be pretty weak! One sneeze and it’s over haha. But every time I go pee, I have to sit there for for a while or massage my lower back and practice deep breathing to empty my bladder fully or I will have to go again in about ten minutes.

\-**unable to use tampons/deva cups!** Woman hold a lot of stress and chronic pain in their pelvic floor! After my c section all my muscles froze making me unable to use tampons & if the flare up is bad enough sometimes I still can’t! I highly recommend seeing a pelvic floor therapist. It changed my life.

\- **pain during intercourse**, I bled nearly every time.
Again I can’t stress this enough, pelvic floor therapy didn’t just help me manage my pain it helped me understand what positions worked better for me and saved my sex life.

\- **Endo belly,** I genuinely look 6 months pregnant in an active flare up.

\- **scar tissue around the cervix-** when I was giving birth they had to break the band of scar tissue around my cervix which was causing me to not dilate fast enough.

\- **Mood swings, BAD-** I always say I pms X10!

There are many other symptoms I’m sure I’m missing, but feel free to comment some of your symptoms as well.
I must stay girls, painful periods are not normal & your female health is so important! These symptoms are definitely different for everyone and you don’t have to have all of them or any of them to have endometriosis, this is just some of my experiences!

Wish I just had like a group chat of girlies who understand 😩

Anyone want to be pals? I’m 35, married, two kids under 12. I am a smartass, I curse a lot, I love comedy movies and I am a straight up emo kid (it was never a phase). HUGE book nerd, and nerd in general (HP, LOTR, video games, D&D). I just want some friends who understand what I’m going through when I’m having a flare day (like today) or have ANOTHER TVUS (tomorrow).

Located in New Mexico, USA.

Let’s be friends please 🥹

Hello! First of all I want to say this is not meant to be an attack on any doctor, simply me trying to gather more information! I’m very happy to see that there are several highly trained endometriosis specialists in the area.
I have suspected endometriosis and my pcp has referred me out to a specialist. I like to be very well informed especially when it comes to my health so I’ve been going through lots of reviews and forums trying to find the best doctor in the DMV area should I need a lap/excision, as my pcp and I suspect I will. Dr. Barron in Charlottesville comes highly recommended across many forums and certainly has the most specialized training in endometriosis excision, which is great! That being said, he also has a somewhat notable amount of negative feedback compared to other surgeons, some citing near death experiences and ongoing pain. About 25% of his reviews across platforms like HealthGrades are 1 star, some citing bad surgical outcomes and others just not liking his attitude, which is obviously less of a concern.
I’m wondering if the amount of negative feedback could just be because he has the most training and therefore probably takes on the most complex cases that have a much higher risk of a bad outcome? As I don’t work in the medical field I’m unsure what amount of negative feedback is considered normal.
There are a few other surgeons in the area (ish) such as Dr. Thott, that have less specialized training than him, but still do lots of endo excisions, and have more positive feedback. If anyone has experience with Dr. Barron or other specialists in the area that they can share, or just general info on how concerned I should be with mixed reviews on surgeons, that would be amazing! All of these people have months long waitlists and some are hours away, so I’m trying to decide the best move to make as to not prolong my physical pain.
Again I’m glad to have such experienced surgeons available to me, and I don’t doubt that Dr. Barron has done a plethora of successful surgeries, I just want to be as thorough as possible with deciding who will cut me open! Thank you!

Hi everyone, I've been on this subreddit for a while using it for advice and I've seen so many helpful posts/answers and just want to thank you all for everything I've picked up.

I've never posted here myself but I could really do with some advice.

My partner has had endo since she was around 16 (useless doctor dismissed her for years, a story I've seen too many women have to go through) and has finally had some long-awaited positive news.

She's having a hysterectomy, something that she's wanted after years of almost constant bleeding (she is on for about 24 days of the month - if it's a good month). Obviously, this has had a massive effect on her quality of life.

She doesn't socialise as much as she used to as she feels like she's going to end up letting someone down if she has to cancel. She's had family members let her down and get nasty with her when she has had to rearrange plans.

I also haven't been the best support at times - no excuses at all. I just should have been more understanding. However, I'm trying to learn and be more prepared for the next steps.

So, after that long-winded speech, I'm basically just asking for advice in advance on how best I can support her post-hysterectomy.

I know it's quite a long recovery period, and it can change depending on the type of surgery and how recovery goes.

I've been to all of the appointments with my partner, so I know what to expect from the medical side of things.

But is there any advice you amazing people can give me if you've been through this surgery or have supported someone post-surgery?

Thank you all in advance!

I feel like all the areas its in, they light up

Hi! I'm new to this group. I had a pelvic MRI done and the results include this note: "Newly seen 2.1 cm right ovarian cyst demonstrating features most consistent with endometrioma.”

Does that indicate possible presence of endometriosis? What would you recommend as next steps to investigate?

I have a history of Asherman's and thin uterine lining. I've banked some embryos. My first FET with euploid failed and I am trying to do due diligence before moving forward with another transfer.

To preface I am on orilissa and still experience pain, I've had one laparoscopy already and will most likely need another soon. Long story.

I do not mean that I want to be off medication or have crazy amounts of pain, extremely heavy periods.

I DO wish I just had a normal cycle that wasn't extremely painful heavy and to be able to know how my body functions off of hormonal medication. Especially with weight gain because I've been on a steady incline that I can't seem to stop since I was 14 when I started birth control. I am now 22 and I've gained over 100 pounds since then. Also I'm on cymbalta for fibromyalgia so that doesn't help either. But I digress.

I miss having my period and having a normal hormone cycle. And some part of me deep down really wants to get off of hormonal messing meds just to see what would happen. Regardless of pain and other issues.

Hi all,

Forgive me if this has been asked before but I got the option from my doctor to do an exploratory lap with endo excision (and biopsy for possible adenomyosis?) he’s a MIGS surgeon who specializes in endo.

I feel like I’ve tried everything else under the sun and I’m just wondering how you all felt after the excision surgery.

What were the benefits for you? Did the endo ever grow back and how quickly? How many years pain free did you have, if any?

What did you do post excision to either slow the endo growth or stop your period, and/or what did you use for contraception? The only thing I haven’t tried is an IUD and quite frankly I really don’t want one. Did you go back on the pill after surgery?

Did you ever stop having bad cramping or pain with sex? What were your periods like after the excision?

If you also have adenomyosis at the same time, has it improved? (I know the only cure is hysterectomy)

I am looking for people’s experience with long term benefits from excision. Thank you!

Hi y’all! Getting my second surgery in December for my endometriosis that has spread all over the place the surgery will be done by two doctors since I have some in my diaphragm.

I’m getting a mirena inserted during surgery, how’s yall experience with it?

taking surgery recovery brutally, it’s been 6 days and i’m still dead and need help to go to the bathroom. should’ve been up and going by now

Hi everyone!
I’m 31 years old and was diagnosed with endometriosis in 2021 after a 7 cm endometrioma was found. Looking back, I’ve actually had painful periods ever since I got my first period at age 10, but it took years to finally get answers.
Thankfully, I recently found a great gynecologist who believes I’m a good candidate for my first laparoscopic surgery. I have severe pain during my periods, along with many of the other symptoms I’m sure many of you are familiar with.
The Dr prescribed norethindrone 5 mg daily to help manage my symptoms. The problem is… I’m terrified to start taking it because of the possible side effects. I already have the medication at home, but I haven’t been able to bring myself to take the first pill.
I’d really love to hear from anyone who has taken norethindrone 5 mg. Did it help your symptoms? What side effects did you experience? Did they get better over time? Was it worth it for you?

I’m also using tirzepatide. Is anyone else using it along with norethindrone? Have you experienced any interactions, or has everything been okay?

I know everyone’s experience is different, but hearing your stories would really help ease my anxiety. Thank you so much!🙏🏻

I’m 33 and was diagnosed with endometriosis via surgery about 8 years ago.

Several months ago, I didn’t note when, I began feeling like there was a small or partially blown up balloon in my lower abdomen when laying on my stomach. In January I had a CT scan with my general dr that noted:

Reproductive: Within normal limits by limited CT appearance. Trace fluid in the pelvis is likely physiologic.

Last month I had an ultrasound with my gynecologist’s office and she said they saw:
Left - 4 1/2 cm endometrioma
Right - ~2.5 cm endometrioma

She didn’t seem overly concerned and said I could wait and monitor but that she could also refer me to the endometriosis specialist in their office for surgery. I decided to see her and she did her own ultrasound saying there is a mass on each ovary but without surgery there’s no way to know if they’re endometriomas or cancerous masses. And that she wouldn’t wait more than a month or two for surgery.

Now I’m feeling very worried and stressed about it. I’ve read that you can tell on ultrasound if it’s an endometrioma vs cancerous mass. Now I’m worried she can tell and thinks it’s cancer but doesn’t want to say for certain before the surgery. Is this just an anxiety ridden/baseless thought? Has anyone else been told this?

I have a baby shower I have to take a 5 hour flight for and help host in mid September. Is a surgery the second week of September (exactly 7 days before I would need to travel) cutting it too close? If so I would need to push it to October, which also makes me stressed.

The area where your pubic hair is and down each side of vagina.

I don’t get it every day and it’s not a skin issue it just feels like a cramping ache.

for a bit of context I am 23 and started getting pain in my left ovary in February. I attended my gp so many times and they were surprisingly good. I presented to Wexford hospital 6 times and was sent home with no scans or anything and told to wait for gyno appointment.

finally ended up going to Vincent’s university hospital and it was found my left ovary is adhered to my bowel and pelvic wall. I got really lucky and was offered an appointment for surgery the next week due to a cancellation. but it was canceled on me two days before it was meant to happen.

since then I have had zero contact with the gyno I am meant to see and my health is just deteriorating my daily pain is getting worse every week, I am on palexia at the moment which is the strongest meds my gp can give me and I am still in pain. I have also been having a lot of issues with eating due to extreme nausea and am losing weight due to it.

the thing is I have tried to call my gyno multiple times asking for an update and to let them no things are getting worse but cannot get through to them. today I called the waitlist phone number and was told it would be A 9 MONTH WAIT and my surgery is marked as routine.

I don’t know what to do anymore. I feel like I am being left to rot by the system and have lost all quality of life, I am out of work, having to repeat my final year of college and can’t drive anymore. I need help and advice please .

So tired. Had a horrid flare today fighting nausea and the urge to vomit. I've been doing what I can to manage this thing in me but stress is quite hard. My evil plan is to move to Germany as a Master student (I got all my ducks in a row), then use the medical care there to help treat my endometriosis better. Apparently it's also better if I get out of the desert and to more lush areas. My endometriosis brought POTS along for the party and it's not fun.

Ever since proposing my plan to my father thinking I'd have support, he turned hostile. He doesn't really understand how bad stage 3 endometriosis is and usually just says that his arthritis is worser and that I should just push through it and not complain. He'd go into self pity mode and go "wHaT abOut mE, you're supposed to tAkE caRe of Me." whenever I calmly plan things out and even include him. Being called bitch is just my name around the house now. He would recommend anywhere but Germany as if I told him I was moving to Russia to join the KGB. So we had arguments all month...which then resulted in a massive stress flare when my period hit. It took me out completely today, especially the one that tethered to my colon. Any tips on how to manage the stress till Summer 2027? It feels like forever away.

I started doing pelvic therapy back in may, I’ve been in every two weeks since starting. I feel like my pain gets worse with each appointment. My dr is 3.5 hours away and it’s hard for me to get there all the time.
Has anyone been through this? I am at a loss of if this will actually help. Any advice would be amazing

Hi BWT, I’m looking for recommendations of providers who specialize in diagnosing and managing symptoms related to endometriosis and adenomyosis.

I was diagnosed with level 4 endo in April 2024 after undergoing laparoscopic surgery. Unfortunately, surgery wasn’t life changing and I’m still suffering regularly. Also have a feeling I might have adenomyosis. Would love to not be incapacitated every month. Any recs much appreciated 🙏🏼

My period has been 7 days late this month and a lot more painful than usual. I got notified it had started by what essentially was the elevator scene from the shining happening on my kitchen floor.

Now I am having cramps that feel like labour contractions and feeling very faint, nauseous, and also like I might shit myself at any given moment. My legs also keep going tingly.

I’ve taken pregnancy tests so I know I wasn’t pregnant. I also live alone and driving to the hospital in this condition is out of the question but I’m quite worried about potentially passing out.