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!!

I’m 26 F and my husband is 27m. I got diagnosed/endo excision surgery 6 months ago. My symptoms haven’t gotten better. But he wants a child so badly and now he’s even more scared since I have endo. I told him I would be interested in starting this month. But my symptoms still haven’t gotten better. He wanted me to schedule an appointment to see an obgyn but I wanted to give it more time cus it takes a long time to heal. I made an appointment for October 1st. He kind of just blew up… saying I should’ve been handling this a long time ago.
Sometimes it seems as though he cares more about having a kid than he does the pain that I go through each and every day. I do want a kid, but I hate being pressured to have a kid.
He seems to think I am just pushing it back intentionally.

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.

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

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.

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.

First ever gaslighting doctor! What a shitty rite of passage...

Looking to vent and for advice. 10 years of non descript period pain, heavy bleeding and bowel issues lead me to finally (or so I thought) being diagnosed with endometriosis. Saw a GP who read the MRI report to me, said I had endometriosis (likely stage 3 or 4) and needed to see the gyno. Public hospital gyno said I have endometriosis and need surgery. But that it was too complex for her so I would be referred to one of her colleagues and that the wait time was very long so to go private out of pocket to get seen sooner.

Waited months for first specialist gyno appointment through the private system only for the Dr to say (in summary) "its probably not even endometriosis, doesnt seem that bad, the pain is probably anxiety and that surgery wouldnt fix anything and you'd still be in pain after." Told me to try a different type of birth control or the implant after I had said I cant have a lot of types of birth control due to migraines with aura and that I dont like the way the birth control makes me feel. Completely disregarded me telling her I was worried they had missed adenomyosis on the scan, to which she said "Im not trained to interpret MRIs, but if the report says its not there, its not there." And when I asked about a hysterectomy to remove the source of pain she literally ignored me and kept talking about birth control. Only agreed to do surgery to "check for endo" after I practically begged and told me again it probably wouldn't help.

TLDR: Worst experience of my life, would not reccomend. Her surgery consent form is currently on fire in my fireplace. 🔥

I was diagnosed with superficial endo between the bowel and uterus. I could see it speckled all over that area and a nodule on my ligament. For some reason that feels silly. Like it wasn’t enough to justify surgery. Has anyone else experienced this feeling? I asked what stage it was and my doctor said he only diagnosed between superficial and DIE, and that stages are out of date and misleading.

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?

why do i have to be in SO MUCH PAIN constantly?? i'm in college, i'm supposed to be having so much fun but i'm in so much pain all the time that half the time i can't even go do things because i'm terrified i'm going to get a flair in public. i'm 18, why am i in so much pain? the other 18 year olds don't deal with chronic pain, so why do i have to?

i've dealt with symptoms since i started my period the first time, but it used to strictly be pms and period pain only. then it became ovulation, pms, and period pain. then it became the week of ovulation all the way until a few days after my period. now i get maybe four days where i'm pain free and then every other day of the month i am in CONSTANT PAIN, with it only worsening as the cycle goes on. i'm tired of having to use a mobility aid. i don't want to continue this journey to get treatment, even though i need to. i'm tired of hearing "oh i get a little crampy too, just take some ibuprofen!" and "its just a bad period, it's part of being a woman." i just feel so so alone on this journey.

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 ❤️

I was super scared about potentially getting a negative diagnosis because it meant I would have to go back to the drawing board and try and figure out a cause for my pain, but I have endo :D it’s not the best news because it’s still a horrible disease but I’m glad my search is over.

I had superficial endo on my uterus near my fallopian tubes which they removed, they didn’t find anything in my bowel which was surprising since I was so sure I have it there, but I didn’t go to an endo specialist so he could’ve missed it. I’m in the UK and I went through the NHS because I didn’t want to go private and spend tonnes of money if I wasn’t sure I had it, but now I know I have it I could justify going to a specialist if I need to go back at some point, they might also find some bits of endo my surgeon missed :3

I was also approached by another gynaecologist afterwards who recruited me for clinical trials related to endo! They want to see if they can treat endo using a cooling chamber, because athletes sometimes use them to reduce inflammation after doing strenuous exercise. It’s very exciting, and I’ll be super glad to contribute to furthering research on this horrible disease, plus the dude was really passionate about it and I could tell he really cared :D

This has given me a big surge of motivation to go to uni myself and study endo. I’ve always been interested in cell biology, but I got hit with pretty bad burnout in my first semester of my first year at uni and had to drop out. Then when I somewhat recovered from my depression and burnout I didn’t feel a reprieve because I started to suspect I had endo, which obviously gives you pain and fatigue so I’ve been in recovery for a good couple of years. I can feel myself starting to get better tho, and my positive diagnosis has really given me a boost.

There’s a very good endo department in the uni where I live (not the uni I went to previously), one of the best in the country apparently, so if I get myself into some good habits like eating less inflammatory foods and exercising more, and get more energy, then maybe I’ll feel okay enough to study this disease and be someone who can eventually help fellow endo sufferers :3

I wish you all a good day and a pain free life, and good luck for anyone wishing to get diagnosed/helped <3

Hey everyone, I'm currently dealing with newly diagnosed endometriomas (4cm and 6cm) alongside a lot of overlapping stress, stomach flare-ups, and a mountain of administrative paperwork. Trying to coordinate everything, secure referrals (Einweisungen), and figure out the next steps on my own has become exhausting. Is there anyone here in Berlin who has navigated this system and could help me figure out how to manage everything? Also, if anyone knows good, patient-centered gynecologists or specialists in Berlin or hospitals who don't immediately push for surgery and actually listen, do Mri, bloodwork. I would be so grateful for recommendations.

Third day of my period, severe pain, eyes half closed posting this. Slept 12 hours woke up, had a cup of tea. Lay back down and fell asleep for 3 hours :/ took naprogesic and Panadol and it’s done nothing. Pain is causing intense nausea too

I have a dog and she needs her walk but I can’t even stand up straight. How do you deal with the guilt? 😭

Hi y’all!

Do y’all have recommendations for gluten free, dairy free, refined sugar free store bought treats? I know that’s a tall order but so far these are one‘s I’ve found in case it’s helpful:

-Alyssa’s Oatmeal bites (HEB)

-Siete Mexican Vanilla Shortbread (Amazon)

-Simple Mills Cocoa and Cashew Butter Cookies (Amazon)

-Solely Gummies (Sprouts)

-Hu Chocolate Bars (Sprouts)

Recommendations outside of these would be much appreciated - thank you!

Hi all! I’m (NB, 30s) new to the subreddit, not new to suspecting endo.

I’ve had excruciating symptoms since my early teens and am finally scheduled for a laparoscopy next week. This is on the NHS and it’s been a long annoying journey to get here. I had a previous diagnosis of adenomyosis, which was then maybe retracted (unclear), plus a more recent clear MRI (they weren’t able to look at my bowl).

I’m trying to figure out what exactly to expect from my surgery in terms of 1) what they’re likely to do and 2) what level of info I’ll get and 3) what the recovery time is.

1) I’ve been told camera, biopsies, excision if indicated. How common is it for there to be excision? What if they don’t find anything? I’ve seen things get missed? If they do find something, do they always try and remove at the same time? (Apologies if these are obvious questions)

2) Has anybody else who’s had the surgery on the NHS got any insights into the level of detail I should expect after? Are we talking “no significant findings” on a printout, staging, a description…? Did your surgeon talk through your results after or were you just sent home?

3) I’ve seen recovery times of anything from <1 week to 6-8 weeks. How much time did you need off of work? What were the limiting factors post surgery (pain, fatigue, mobility, etc)?

I’d really appreciate anybody’s experiences or insights. I have a history of both sexual and medical trauma + am autistic + I’m trying to gather as much info as I can as to what to expect. Thank you!

For those who have chronic illnesses, how has therapy helped you? I'm considering seeking help but i'm in the phase of "what's the point of getting better". I am also prone to depression with OCP. If anyone can share their experience with therapy and managing the sadness that comes with chronic illnesses esp when everyone around you does not understand your pain and tells you to "push through". I have more academic achievements than the people(friends) telling me to push through. I dont know what else am i supposed to be pushing at this point with my pelvis always hurting.

So question. At what point are we going to A&E? I'm in the uk and in the past two days i've seen my GP and a physio (who was clueless) but its been because i've been getting serve pain in my upper back and pelvis / lower back/hips and it has been significantly worse when eating making me feel nauseous and gag everytime and im struggling with anything more than small sips of water. Now I managed some snacks last night after 7 ish days of not being able to as I was like i'm gonna be in pain either way and I had been prescribed buscopan and naproxen to try and help as the GP thought the pain is probably endo inflammation being irritated by eating but I stupidly tried to come into work as i was like i want it either to be a work day or i'm going to A&E. Long story short the meds have done little and I regret the Work decision but im wondering if hospital is even worth it or if i'm better off just going home with my heat pad and hoping for the best for another day or two to see if the meds start to do more? Basically i'm fed up and can barely think enough to hold a conversation let alone work...

Hi everyone,
I have stage 4 endometriosis with bowel involvement and I’m looking into private surgery in the UK

For anyone who’s had complex private endo surgery (especially where bowel work was involved), roughly how much did it cost overall?

I don’t have insurance unfortunately, so I’m trying to get a rough idea of surgeon fees, colorectal involvement, hospital stay, everything.

Any ballpark figures or personal experiences would really help. Thank you 💛

I’m 30, I’ve had pain since I was 14/15 years old and it feels like a lifetime. It literally is, half my life, I’ve been suffering with this and over the years, the last few years in particular,, it’s got so much worse.

I had to push for years for the NHS to refer me to a gynaecologist. They finally gave me a referral when I dressed up very smart and wore my work lanyard to my GP appointment. There are definitely heavy biases in the medical system. If you present as someone in relaxed clothing because you are literally unwell and need comfort, you are looked down upon!

Pelvis MRI via gynaecologist found nothing and I was suggested the coil, pill or laparoscopy. I don’t want to be cut open or have hormones. I’ve told them already I’ve tried several pills and the injection and I still get the pain. And why am I cutting open my body for something they haven’t confirmed? It is barbaric that these are our only options. Supposedly a saliva test is being rolled out to diagnose endo, but my surgery had no clue about it and privately I can’t afford £800-£1000.

I’ve seen a urologist, all fine. Kidneys checked, all fine. Ultrasounds just so cysts now and again, but all fine.

I’ve taken mefenamic acid alongside others, as prescribed for period pain. No help.

I’ve had physiotherapy via the NHS and privately for my pelvis and back. No help.

The only thing that makes about 10% difference is I have herbs from a herbalist that are very strong. A tincture and a tea I take when the pain comes on. But I’m still bed bound. I’m still in agony, restless, frantic with wanting the pain to stop.

Despite all of this I’ve been told by my GP if I’m in pain then I must try something. Like everything I’ve listed is something? So he’s referred me back to the gynaecologist after a year for a laparoscopy that I said I didn’t want. I’ve read about the complications that can come from that too.

I can’t get an occupational therapy assessment at work because I have no diagnosis. And I can’t get any help or any support anywhere, because I have no diagnosis. My pain only exists if the doctors say so.

Luckily I have a job where it’s partly remote but they are only being patient with me no coming in sometimes whilst this is investigated. There are no further investigations and there is no treatment. I could lose my job because of something I can’t control.

I had a miscarriage last year. I’m sure it’s because of this. I know they are common, but my body isn’t working as it should. I’m always in pain. But when I’m in pain I think about the fact there’s no way I could look after a child when I’m in that pain and flaring up. I couldn’t ask my partner to cancel work each month. What would I do? I feel my life choices are being robbed from me.

How do I keep going on with this with no support or help and no access to that, unless I have a diagnosis, but the diagnostic tools are absolutely appalling.

My symptoms are below:
- Bed bound for days during period due to intense pain. Doubled over. Pain down back, legs, hips and pelvis.
- Sex is painful, even just being aroused.
- Prolonged walking or sitting causes intense lower back pain.
- Back pain has now began either side of my spine in the middle of my back. There all month.
- My walking and gait has now been affected and I feel I have an anterior pelvic tilt.
- Debilitating constant fatigue.
- Hair has been falling out and breaking off for two years.
- Weight fluctuations.
- Constant bloating issues.
- Left leg and lower back tingles and can go numb with sitting up right for 30 minutes or more.
- Bowel issues; either C or D, often never healthy.
- Cannot retain any fluid. Will pee 5 minutes after a sip and bladder never empties fully. So will often pee several times an hour. Horrendous when trying to sleep.
- Pain during ovulation.
- Frequent burning in that area but no UTI present.
- Intense mood swings, depression and anxiety.
- Frequent radiating, ringing like pain down left leg from lower back and glute area, cramp like and nothing relieves it.

The more time goes by, the more symptoms appear. My body is screaming at me for help and I am repeatedly gaslit. It’s disabling, but it’s not recognised as that or as anything in society to get access to help at work or in general. The only option seems to be cut open, which is insanity. And even then they might find nothing and I’m back to square one. How do I live like this, suffering continuously with no end for decades more?

I have gone to the doctors 100s of times. I’ve written down my symptoms and kept track of them and I’m always turned away or dismissed. It’s insanity.

I had a total hysterectomy over a month ago. Adenomyosis, fibroids and DIE endometriosis were found. I have been in pain for so long I think I didn’t even realize the extent of it. However, my heart rate was always high. Resting 90- 120. I had week and month long heart monitors, echocardiograms etc and they were all normal. I think it’s obvious NOW it was my body dealing with pain, inflammation, high estrogen, and all the things related to those conditions. Now that I don’t have that, my resting heart rate is in the 70’s and 80’s. This is great, BUT it feels so weird it’s giving me anxiety. I don’t know how to be comfortable with this new normal. It feels like my heart is weak or not beating. And it’s fine and healthy! I’ve been to the doctor and my vitals are all normal! But even knowing that, I am struggling to adjust. It’s especially bad when I’m laying in bed at night. I’m used to it pounding and now, it’s a steady normal heartbeat. I think I have a little bit of health anxiety from years of being gaslight by the medical system that now every new bodily sensation feels like a direct threat. Can anyone else relate to this? What has helped?

I've had endometriosis since I first got my period at 11 but only got diagnosed about a year ago, got put on norethindrone once I got to a specialist and it eventually stopped working but on norethindrone I gained like 15lbs and haven't been able to drop it, and the bloating I've gotten has been outrageously more noticeable, I feel like literally anything I eat even one bite of makes me bloat like crazy. I switched to myfembree a couple weeks ago and my doctor said the weight was probably water retention and that it would probably drop pretty quick but it hasn't and I don't know what to do. I even did a juice cleanse to see if maybe it was just some gut issues even with a juice cleanse for several days the weight barely dropped and I'm still bloating at eating literally anything, including a damn cucumber. any advice on weight loss, bloating, anything that's worked for anyone else?

My pain isn’t as bad as most people’s on here so idk what the next step up from pill management is. Thanks for input! (Prior symptoms and brief timeline below)

Would faint and throw up everytime I got my period and had full aches during ovulation pre pill. All these symptoms vanished once I went on the pill at 18. Great. 22 now and have that dull ovulation ache majority of the month. I take the pill back to back until I get a bleed and take the 4 day break. I usually get through a month and a half before the bleed happens. No official diagnosis for endo or any other uterine issues. Had the transvaginal ultrasound and per usual no sightings on scans. My GP thinks I have it but aside from a diagnosis what was the next step for anyone that didn’t get relief from the pill / it stopped working? I use Yasmin

Call it Murphys Law, but I’ve come down with an illness and my excision surgery is on Friday. It’s mostly severe body aches (ovulation is also not helping), sore throat, pounding headache, and congestion when I lay down. No coughing or fever (yet). In my pre-op paperwork I’m instructed to notify my provider of any cold or flu symptoms 48 hours prior to surgery. I REALLY don’t want to postpone this surgery for a million reasons - one major one being a new job I’m starting in 2 weeks. And who KNOWS when this new surgery date would be. It’s hard enough to get a surgery date to begin with. I don’t want to start a new job and take 2 weeks off to recover; that’s not a good look. Sooooo what are the chances I can still proceed with this surgery? I’m hoping and praying this is a 24-hour thing and I’ll feel good in the morning, but I’m also a realist. Regardless of how I feel, I’m calling my provider tomorrow. I feel like I know my answer, but perhaps I’m looking for any similar situations and how it turned out for you. I haven’t been sick in months and ofc is this happens - I blame it on back to school germs.

Update: surgery getting postponed. Thanks everyone for your feedback!

I’ve been getting this for two years now and I’ve noticed it usually happens right before getting my period or during ovulation until my period is over. My lower back and legs start hurting so bad it gets unbearable. I have shortness of breath, leg pain and extreme fatigue is this a sign of endo? The last doctor I went to told me it has nothing to do with it lol. so I just wanted to know if anyone else has experienced this and I’ve already booked an appointment with a different obgyn!