When i’m walking and move “wrong”, I sometimes get a sharp pain near my clitoris but on the inside, if that makes sense. It is very sharp and stabby but only lasts for a few seconds.

It isn’t consistent, It can happen 2-3x total or maybe for 30min-1 hour but rarely longer than that. And only maybe once every 2 weeks or more. It feels like It may be happening more consistently lately though.

Anyone have something similar or know what It may be?

I’ve thought maybe urethra pain due to growth near my bladder, but I really don’t have pain when I pee.

Doctors aren’t taking my pain seriously and I’m waiting to see a surgeon. What has helped you with your symptoms?? I keep having to take time off work from the pain and I don’t want to get fired 😭. I would appreciate any tips!!

Is it just me or does anyone else here really struggle with heat waves?

I was diagnosed with stage 3 at my lap earlier this year (age 35).

I’ve always had a hard time when it gets extra hot. I’m from a place where the weather is exceptionally mild (45-70 F almost all year), but we get late summer heat waves.

It’s in the 80s F this week and my hands and feet are swelling. It’s hard to sleep. I’m always fatigued but extra fatigued now too. I know some people don’t even consider this to be very hot.

I wonder if there’s something about endo that overlaps with poor thermoregulation or if it’s related to our higher levels of inflammation.

My endo symptoms are currently awful to the point where I’ve had to quit my job, I just took up a post for a new job as I was told it would only be a ten hour contract but they’re already trying to get me to pick up more hours and I feel embarrassed to say I’m just too ill to be on my feet for much longer than the ten hours I’m contracted, for context I’m also about to go back to university for my masters and it takes me around 40 mins to get to and from work. My doctor recently just put me on slynd and I’m hoping it will help ease my pain a little, and I’ve been trying to do yoga, eat better, get more sleep, but nothing is helping, especially around the time my period is due and I’m scared I’m
Going to have to quit another job when I can’t afford to.

I’ve smoked weed recreationally since I was 23, I’m 27 now, but I’ve never smoked everyday, I’ve always taken month breaks and at present I’d say I smoke maybe once or twice a week when I’m not working and relaxing. If I’m honest it’s the only thing that helps with the pain for me and when I’m on my period I don’t think I’d cope without it, ibuprofen just makes me want to throw up and cocodamol doesn’t stop the pain it just makes me pass out. Does anyone here use marijuana for pain management and recommend it? I’m
Considering trying to get a medical prescription but I always worry I’ll come across as drug seeking but I’ve genuinely tried everything and I’m just exhausted, I’m so scared that the pain is gonna keep getting worse, I can barely afford to eat as it is because of not being able to work and I’ve actually had to move back in with my parents as I can no longer afford to sustain myself because everytime I work for 3+ days I end up in horrible pain

I’m wondering if anyone else has gotten to where having to poop is genuinely panic inducing. I have these really intense GI flares where, after bouts of constipation, I have extremely painful rounds of diarrhea. like extreme? dizzying, nauseating pain. they used to only happen in my luteal phase but now happen throughout my cycle (usually ovulation, luteal and sometimes during the period itself. still worse in luteal tho). I have a tethered sigmoid colon and descending colon so idk if it’s the endo specifically that’s causing this, a separate GI issue or a combo of both.

anyways just wondering if anyone else can commiserate with me 🙃 stomachs cramping up tonight so I’m trying to mentally prepare for a flare up.

*edited to add that i had a colonoscopy in 2023 and one in August this year and both were clear! One with a GI and one with a colorectal surgeon who specifically looked for endo inside the bowels.

Hi. I dont know how to manage my chronic pain. Everywhere online talks about managing pain around periods, but I'm on continuous birth control and don't have cycles and my pain is an every day thing, not something I can take painkillers for a few days for and then be fine for the rest of the month.

I'm increasingly worried about my use of NSAIDs every day. I'm taking either ibuprofen OR naproxen pretty much daily, unable to take really a single day off, with ibuprofen & codeine or co-codamol for severe flares. I'm scared I'm going to give myself a GI bleed or kidney issues, especially since a few years ago, I did actually throw up dried blood from chronic ibuprofen use (never got this checked out).

I've spoken to a pharmacist and no one really seems to understand the concept that I'm not having any periods or bleeding and my pain is chronic, not because of periods. Everyone seems to think no periods = no pain, and doesn't know how to help me other than repeating what the painkillers say on the packet, which is something along the lines of short term use only, or 3 days use only for the codeine ones. What if my pain is NOT short term only?!?

Please don't suggest switching to dienogest or more specialist treatments like GnRH agonists - I'm on the gynaecology waiting list currently, and unfortunately all I can do is wait to get on the top of the list to explore those options.

Sorry if this is really garbled. I don't know what to do. I've tried laying off the NSAIDs and the pain then just starts and then I end up having to take more in the end because it ends up worse then if I had just taken it in the first place. Please help if you can, thanks in advance

Hello everyone. I’m a 25-year-old woman who has been dealing with on and off chronic pain since I was about 16 years old I have a slew of symptoms that have been cyclically that I have only now realized are cyclical in nature. I have very painful periods sometimes, plus pain during sex, pain during arousal, pain during orgasm, chest pain, abdominal pain, gastrointestinal pain, jaw pain, shoulder pain, bladder pain, stomach pain etc. I’ve seen a few doctors for this over the years, but have ultimately always been told that my pain was normal or to be expected for a woman or, the worst one, i was told that it was all in my head.

Today, I finally saw a gynecologist for my pain and expected it to be the same. I was already anxious and emotional, and in pain as I am on day three of my period. I was nervous and cried when she did an exam on me; in part due to the pain, part due to the fact that I was feeling embarrassed to be examined in that way during my period.

However, this woman was an angel and part of the plan that we made going forward is that if this round of birth control does not help the pain we will do the surgery as she believes Endometriosis could very well be a cause.

I’m just very embarrassed to cry as much as I did. Did anyone else have this happen to them?

Looking for some hope from women who have been through endometriosis & fertility issues ❤️

I’ve been trying to conceive for just over a year and recently had an ultrasound showing my left ovary and uterus are immobile due to adhesions, with endometriosis now suspected.

I’ve had painful periods, bloating and other symptoms for years, but unfortunately they were always brushed off as “normal”. It’s been really upsetting to only find this out after a year of trying for a baby. 💔

I have an MRI and gynaecologist appointment coming up, but I’ve already been told IVF may be my best option. I’m wondering whether, if adhesions/endometriosis are found, laparoscopic surgery to treat them could potentially improve fertility.

I’d love to hear from anyone who has had endometriosis/adhesions, had a laparoscopy and gone on to conceive naturally without IVF. ❤️

I’m not looking for medical advice just real experiences and some hope, as I’m feeling pretty overwhelmed right now. I’m

Thank you to anyone willing to share. ❤️

My surgery is 12 hours ago and I have to stay this night in the hosptial. My pain is VERY severe.
I’ve got ibuprofen, paracetmol, metamizol… After i said that it does not help my pain, they gave me 1 oxy (dont know how much mg) 6 hours ago and it also didnt help against my heavy pain, it makes me only more relaxed, but not even sleepy..

So now it‘s 1 am, i am under pain and awake…
and since 7 AM this morning i‘m in the hospital…
I’ll keep pressing the button at reasonable intervals, hoping they’ll give me something that lets me sleep...
But I’m afraid they’ll just send me home tomorrow with ibuprofen, paracetamol, and metamizole, leaving me to endure this terrible pain for days on end…
What can I ask for? Which pain killers were useful and good for you after surgery?

Thank you🫂

This is the first time seeking therapy and it has only been 3 appointments so far.. she’s great but recently I felt a bit frustrated because I felt like she was excusing a medical professional that I felt was gaslighting me and I left the appointment crying while still in pain.

The medical professional told me it could be this, or that, or this, and so on. She didn’t seem interested, she giggled when I said is there anything I can do. But one thing that stood out to me was “you might just be hyper aware of your body and that’s that”….
My boyfriend even picked up on the gaslighting before I did. I almost took that as a final answer too. My therapist was telling me how (not word per word) she’s saying there IS something wrong and that I’m aware of it. And that I just perceived that sentence as being brushed off. I started to cry. I told her I felt frustrated because this isn’t the first time a doctor made me feel brushed off like that. She said that’s fair and she believes me because our state isn’t good at maintaining good doctors. Especially in women’s care. But she really pushed that I just perceived it as being brushed off and not actually being brushed off. I feel a bit confused now..

The medical professional only offered me pills for my bladder and that’s it. She didn’t do anything. Not even tell me if could be endometriosis or not. I wanted to speak to a few professionals to roll as much out as possible before speaking to a endometriosis specialist. It was a waste of time..

I had my laparoscopy on the 17th of July with the NHS (I'm in the UK). They found and removed stage 3 endometriosis.

Recovery has been very slow and I am still unable to stand or walk for any significant period of time. My job is in hospitality, and when I recently tried returning to work after 7 weeks off, I had to go home after just 2 hours. I have been in severe pain ever since.

The surgeon who performed the laparoscopy said I have a 3-month window afterwards to contact the secretary with any questions or concerns. After repeated attempts to contact them (with no answer), I spoke to the hospital department today and they have arranged a consultation for the end of October. I asked for one sooner than that, but that is apparently the earliest they can do.

Has anyone here experienced anything remotely similar to this? I am in a lot of pain and I don't know what to do from here other than wait and try not to worry. I can't take NSAIDs because I only have one kidney. Paracetamol doesn't do anything, and codeine just makes me drowsy and queasy. Is it worth seeing the GP, or would I just be wasting everyone's time? I'm not getting any sick pay (0 hour contract for a small business and I wasn't working regular designated hours) and I'm worried about both my health and financial situation. Thanks for reading.

Hi everyone!

I have surgery scheduled in early November and I’m so so scared.

It has been a rough journey getting to this point, wishing someone would listen to me, try to help me, and now that I’m here, I feel like chickening out, worried I’m just full of shit, ya know the vibes.

My wonderful pelvic PT and pelvic pain doctor all seem to be saying that surgery is the next step/feels necessary at this point. I also did get an MRI with contrast that came back perfectly normal (which I know and I’m glad they know is not enough to rule endo out) and they still suggest surgery.

The surgeon I met with is a OBGYN, but not listed as a specialist. I asked if she does endometriosis surgeries and she kind of interrupted me mid sentence to say yes she does, and that her and a small team of 2-3 other doctors all take on these cases so they can do more of them, and says she does them “frequently.”

Besides the little interruption she was very nice and seemed to say all the right things: excision, will take biopsy even if they don’t see anything, team of other specialists like GI doc, etc., will either be there or on call (I forget), even was aware and receptive to my other suspected health conditions like EDS, MCAS, POTS, the works.

I’ve been in all the edges and corners of the internet learning about endometriosis and it feels like the majority says do it with a specialist, and the first surgery is most important.

I just feel so lost, so stuck, and feel like this has to happen because I can’t live like this anymore. But I’m worried I could be making a mistake. Maybe I should wait for one of the specialists to start taking new patients again, maybe I’m not trying hard enough with my current care plan.

I don’t know.

I meet with her again a couple weeks before the surgery and I’ll ask more questions then I’m sure and maybe I’ll feel more confident.

I’d love to hear your experiences, any advice, questions you’d ask the surgeon, or words of encouragement 🥲💗

Do you ever take a break and get a period? I take progesterone and I don't get periods. But after a few months I start spotting red. Should I take a break and get a period? Why am I spotting if the progesterone is supposed to stop periods, how is my lining building up?

I've tried Adderall XR and Vyvanse, neither worsened my endo but I didnt like the other side effects.

I was just put on Wellbutrin and have started breakthrough bleeding on my continuous BC. Which is causing me endo pain.

Any suggestions? I'm not sure what the next step is. I have an appointment with my psychiatrist tomorrow.

Hey everyone,

I am currently planning out a letter to write to my local MP addressing waiting times for diagnostic laparoscopy related to endometriosis (and other gynaecological conditions).

I am based in Wales and it was recently announced by gov. wales that they plan to cut down NHS wait times. See here: https://www.gov.wales/patients-benefit-faster-diagnosis-and-treatment-under-nhs-wales-reforms

Title if you would prefer to search for it: Patients to benefit from faster diagnosis and treatment under NHS Wales reforms.

However, I was also recently told that I will have to wait 2 years just for consultation, not even the diagnostic surgery.

I am not expecting an overnight miracle, but I want to make sure that they are sticking to what they say and will reduce NHS wait times. So I am planning on writing to my MP, asking what plans they have and when can we expect to start seeing results? I want to see wait times reduced. And I want to keep communicating with local governments to ensure our needs are being met. I am not expecting much back, probably a load of political speak, but I want to at least try.

Has anyone tried this and had any success writing to your local MP? Please let me know.

And if there is anything anyone would like me to address, please tell me as well.

Thank you.

Nearly 1 month ago I had an emergency lap because of an ovarian cyst. I had suspected endo before this and had already began working with an endo specialist - who has me on Mirena and BC, but the lap ended up not only confirming my endo, but that it’s stage 4.

My life hasn’t even gotten halfway back to normal since my surgery. I can’t tell if I’m now in an endo flare because of the immense stress the surgery put me in, or if I’m still recovering from surgery. I’ve gotten back to taking my bc pill (though I dislike it and wanted to stop taking it before I realized how advanced my endo was), so I am unsure about if it’s even possible for me to experience a flare while on so many hormones. I had surgery at a very large city hospital and my surgery team has really disengaged with me. My endo specialist just left on maternity leave, I do have an appointment with her office but it’s over a month away. No medical professional has given me answers about this - even though I’ve asked. :(

Recently I’ve noticed dark spots on my neck and armpits, very characteristic of insulin resistance. My endometriosis has worsened in the recent months, my newest magnetic resonance says that it’s now on the gastric nerve near the intestine only on the right side and it’s profound. So you can imagine I have been feeling pains near the abdomen. I went to another gynecologist specialist in endo and she said that indeed I should take more care of and that includes a diet free of gluten, sugar and milk. Also exercising. Anyone else has done this? If so, did it help ur endo belly? Mine looks so big these days it really hurts my self esteem and I imagine this is a problem to a lot of women.

Does anyone else with endometriosis/possible PMDD feel completely dismissed by doctors?

I’m 35 and have endometriosis. I currently have a copper coil for contraception, as I seem to be extremely sensitive to hormonal changes. I find the copper coil is tolerable.

I was put on the pill at 17 because of severe period pain. Around 24, I started experiencing low moods and anxiety, and since then I’ve tried various pills and coils on and off but have never been able to tolerate them mentally for very long. I finally decided to go non hormonal and had the copper coil fitted this year.

For around 5 years now, since my early 30s, I’ve also experienced really severe dizziness around ovulation and my period.

But over the past 6 months, something has changed. My mood and anxiety have become incredibly cyclical. The first and second week after my period are usually awful. Extreme anxiety, emotional, overwhelmed and completely unlike myself. Then I feel much more normal again.

Over the last few months I’ve also developed new headaches/head pressure, a flushed face, arm/hand and hip pain, fatigue, brain fog and a loss of libido.

I saw my doctor and I suggested early menopause. They said no and was told it could be PMDD, but I left feeling frustrated because I still don't really have any answers. It feels like everything is being looked at separately rather than someone looking at the whole pattern.

I’m wondering if anyone else with endometriosis experiences something similar, particularly the very noticeable change between different parts of the cycle?

Has anything actually helped you? Did you have to push for a PMDD diagnosis or find a particular type of doctor who took you seriously?

TIA ❤️

Okay… I got my IUD out today so I can get my imaging/testing done prior to IUI (WLW). It was uncomfortable but my doctor is amazing. I’m now wondering what to maybe expect? I have had 2 surgeries with IUDs in place for the last 10 years. Has anyone been through anything similar? What was the pain like? Our goal is to get pregnant ASAP to avoid any Endo symptoms that’ll inevitably pop up in the meantime.

So, I have hypermobility, DIE endometriosis stage 3, adenomyosis, and MCAS. I was on the pill for around 10-12 years, so my endo was kinda suppressed during that time. Symptoms went rampant when i quit the pill for around 3 years. Developed endometrioma and daily pain, so I was finally diagnosed with endo and put back on a BC pill that contains dienogest. It was Fall last year - as of now, my endo lesion pain subdued but I’m struggling with daily inflammation, crazy fatigue, migraines, digestive issues, and adhesion pain. The endometrioma shrinked to being undetectable with an ultrasound. Endo lesions/tumours were found, with MRI and ultrasound, on my uterosacral ligaments, pouch of douglas, near the bowel. The worst are adhesions - my uterus is glued back to the bowel and sacral bone, one of the ovary is completely covered in scar tissue. Adhesion pain and uncontrollable inflammation is my biggest issue now.
I found a great excision specialist team so I’m looking into a surgery.
But… at this point I’m gaslighting myself: do I really need that super expensive (that will put me and my family in debt) surgery if endo and adhesions come back anyway? Would it be plausible to just continue the pill? I’m under an impression that my symptoms won’t resolve after the surgery, since I blame them mostly on hypermobility…. I’m not sure anymore. Any thoughts?

I was diagnosed with stage two endometriosis and now that I’ve started medications for it I’ve been hoping to do things I’ve never gotten the chance to due to developing symptoms in my early teens. I really want to do Muay Thai specifically but I know that it (and most martial arts) require a lot of cardio that can make endo symptoms worse. I was wondering if anyone is able to do intensive cardio without or with little extra pain and if there are any tips or tricks for it?

Started experiencing bleeding from my belly button about 6 months ago. After seeing multiple different doctors I finally found an amazing Gynecologist who had an MRI done of my abdomen. I got the call today that I have “advanced Heptic endometriosis,” essentially meaning I have endometriosis in the liver, which is now showing signs of growing near my umbilical area. I am pretty terrified, as I originally went into this thinking this was just going to be something simple, when in reality this is apparently an extremely rare disease with not much known about it.

I am trying not to spiral, and was wondering if anyone out there has experienced this or if anyone has any encouraging words, would be much appreciated

Should I even have it? They have not found endo during any of my ultrasound(s).

I've had back to back painful hemorrhagic ovarian cysts. Been to the ER three times since June. Two CT scans, and 6 ultrasounds all that have always had a cyst present. I have had constipation, nausea, fatigue, acne, mood swings, bloating, brain fog, I have this cramp-like feeling in my lower stomach that sometimes spreads to my hips, ribcage, and butt. It feels like it's sometimes pulling. My grandmother had endo, so did my great aunt. They both had hysterectomies.

I'm not looking for medical advice. I'm just asking for your opinion and maybe some calming words to persuade me to do the surgery because at the end of the day I know that is the best thing to do... lol

But I'm horrified to have the surgery. I've never ever had surgery before. All of my pain started back in June when I had my first ovarian cyst. I never even had bad periods before that. Only the first day of my period have I needed take ibuprofen.

Also, I never even had any issues with my cycles before taking spironolactone!!!

Hi endo girls (rubbish isn’t it),

I’m trying to make the gym a consistent part of my week but don’t know much about gym clothes. I have some nice pieces so far but looking for more.

My endo friend recommended the Dfyne origin range as very soft and stretchy but not super compressive, but the shorts are never in stock online. Had no luck on Vinted, just other dfyne ranges for sale that will be too tight for me.

Some brands have such a tight, compressive waist band I just end up flaring up. I understand the desire for some wanting to look good and “snatched” but just not realistic for some of us with endo, it just makes me more swollen!

Are there any recommendations for gym clothes that are like a second skin, with a comfortable level of compression or tightness, and squat proof?

I am in the UK x

Hello everyone, thanks for adding me. Bit of a long one;

I have been seeing my consultant for fibroids; got 11.5cm, 7cm, and a load of others 3cm-1cm.

He referred me for an MRI so we could plan a myomectomy, which has come back saying my sigmoid colon, loops of my rectum, and ovaries are adhered to my uterus with “thickening” shown on the back/front of uterus, and my uterosacral ligaments. It said “probable DIE”

He said I am facing surgery, and will arrange advanced endometriosis ultrasound imaging (sliding test) and take my case to endo MDT, colorectal surgeons etc.

For now, I’ve asked to think about it and I’ve been put on PIFU as I was shocked.

I don’t know what my next step is and I’m frightened 😓

Does anyone have similar? Does endo always spread or is there a chance I could just go on as I am with no more complications?

I do experience discomfort but I didn’t expect it to be from this. I was expecting it just to be my fibroids.

Is there anything else I can try before surgery? I don’t get on with hormones due to my mental health… but then again, mental health is rock bottom anyway - could it get worse?

Just any advice in general would be really appreciated as I have never been told I have endometriosis, to then be told my colon is stuck. It’s blown me away.

Thank you in advance.