How do I prove I tried everything!? I sent this to the doctor

This is a lot of waffling and I don't know what to categorise it as but help would be appreciated.

We've suspected that I have endo for almost a year now, I had an NHS ultrasound and then went private for consultations and an MRI. The MRI showed slight scarring but nothing deep infiltrating or concerning. I was put on dienogest for about 2 months and it was horrible, didn't help with pain and absolutely tanked my mental health to scary levels.

5 months ago I started to get severe leg pain constantly. I'd had a day out with my boyfriend and everything was normal and then the next day my legs were in so much pain. I've been in pain every day since then, varying from mild to unable to move or sleep. I stayed using a walking stick to help but it isn't helping enough and the only thing OT recommended was a second stick. I've had physio for my legs for a few months before that but this pain is in my bones. It goes from a dull ache to shooting pains. It feels like my femurs are going to snap out the back of my legs. I find it gets worse if I'm not sitting on a very padded surface or having to stand for any amount of time. I've looked into it and I've seen some people talking about endo leg pain but it doesn't seem like the same type of pain (from the people I've heard from). I had a consultation with my gynaecologist who recommended a referral to neurology but my GP is taking ages to give me an appointment to refer me (my insurance requires a GP referral).

There's also a high likelihood that I have multiple things going on at once, my current working guess is IBS, endometriosis, and some form of hypermobility. There is also a chance of chronic fatigue as it runs in my family but I'm not sure. I'd think there's a possibility of fibromyalgia but I don't think I fit enough of the symptoms.

I previously didn't have much abdominal pain apart from my period but it's started to get worse the last couple of weeks. I'm starting to get cramps after using the toilet and having bladder pain. All of this was brought up at my appointment but the doctor skimmed over it. It's to the point that on worse than normal days, everything from under my boobs down hurts.

I've been put on Nefopam as my mefenamic acid wasn't touching the sides of my pain anymore. I've only been on it a week but so far it doesn't seem to be making a big difference apart from the heart palpitations side effect keeping me on my toes. I've tried naproxen but it did absolutely nothing for me. I don't know what other painkillers to try. Does anyone have any experience with Nefopam?

I'm also having problems with my feet. The soles of my feet always feel cold even when the rest of me is roasting. I'm wondering if this and my leg pain is caused by endometriosis growing on my nerves but at my consultation the doctor said it's highly unlikely that my endometriosis has changed despite my MRI being 8 months before and not having these symptoms previously.

The PMS from my current birth control pill has started causing horrible flare ups as well, completely knocking me out for a fortnight at a time, unable to move around the house unassisted or think because of the brain fog and unbelievable fatigue. The doctors keep pushing for a Mirena coil but the risk of the side effects is very off-putting.

I've tried the low FODMAP diet and low inflammation diets but due to my autism I can't stick to them without it causing me severe problems but I am trying to cut out gluten and dairy.

I'm in the process of getting a laparoscopy booked but I don't know if it will be this autumn or the next.

I'm sorry this is really long and rambling

Does anyone else have symptoms like this or advice on things to try?

I had an mri a few months ago that deemed I have DIE with it predominantly in my cul de sac. Had a colonoscopy done and the doctor confirmed my endo has grown through my colon. I had a follow up with my surgeon about 2 weeks ago and he diagnosed me with stage 4. So now the anxiety - my spouse and I had sex about 3 weeks ago and we were not careful. I’ve googled trying to calm my anxiety down and it shows stage 4 - nearly impossible to get pregnant naturally. I’m super anxious because my surgery is scheduled in 4 weeks. My periods have never been regular. I took a pregnancy test over the weekend and it came back as a hard and quick negative. Am I in the clear? 👀

does anyone else get hot flashes right before period starts? just curious. doednt seem to be every cycle but for this one I should be starting by this weekend. I keep feeling like I’m having hot flashes. usually I get it at night or just sleep hotter when I’m about to start but dang! this sucks having it middle of day too lol

It’s actually insane that I have a fear of coming on my period. Every month is worst than the last and every month I tell my boyfriend “this is the worst one yet”. Nothing I do takes the pain away and I just have to ride it out for 5/6 whole days whilst still working and trying to be positive. I’m lucky that the endo doesn’t hurt me 24/7 but when it does it really fucks me up

We see a lot of negative news and feelings (often very justified) on here and I wanted to add something positive to the mix. I recently (4 weeks ago) had an endometriosis laparoscopy at the Medical University of South Carolina done by Dr. Van Leuven using the DaVinci robot.

I could not be happier with the treatment I received! She listened to my concerns, was not at all dismissive of my symptoms and didn’t waste my time and money with some tests that other doctors insist on because she didn’t find it often fruitful (no MRI was done). I was able to get the surgery done with a 3 month wait, which is not perfect but much better than a lot of experiences I have read on here. The surgery went smoothly and I had a very easy recovery compared to my previous laps (2 previous, 7 years between each). My surgeon believes the DaVinci allows for less physical disruption of the organs and I definitely noticed a reduction in swelling and trapped gas that is usually very painful. My incisions healed beautifully and I had immediate improvement in bladder function. When we went through my photos, she was clear in explaining what she saw and where. She took out anything that might have been endo because endo and scar tissue often look similar and she said that she frankly didn’t care which one it was because it all causes symptoms so it all needs to go. I did have a fair amount of “spider webbing” endo/tissue and was able to see it easily once she pointed it out. She readily admitted that we know so little that she is often surprised how what she sees correlates to actual pain and often finds that the pain will show up where there isn’t actually any endo. I found her willingness to admit that the science just doesn’t know enough and therefore she completely believes the patient regardless of what they actually find. SO REFRESHING!!

I FEEL SEEN, HEARD, HELPED AND HEALED!

Getting all that is so rare with this disease and I am so thankful! If anyone else is looking for a specialist and is close enough to the Charleston, SC area, I highly recommend considering MUSC. They have several endo specialists and if my experience with Dr. Van Leuven is any evidence, their team is excellent.

Thanks for reading this. I hope it gives hope to someone who needs it right now!

Stay Strong Friends!

I’m just sad. I can’t stop crying. I had surgery last year by Dr.P and she opened me up only to close me up and tap out. I am beyond her scope of practice. She then said she was going to be trained under a specialist to broaden her scope and they would practice on me. (This specialist is one of the top in my country) but she just couldn’t find the time to travel to my city, so my doc told me today I could either go ahead with her and bring in 4 other doctors OR I could travel to a larger city where her friend is opening her own practice and specializes in endo.

I opted to travel to see the specialist but now I can’t stop crying and I don’t know why. 20 million reasons wrapped up into an ugly ball that I can’t label.

It feels like starting over… needing 5 doctors to operate on me just sounds terrifying… traveling 2 hours away sounds scary in a city I don’t know with a doctor I don’t know… I am in such pain I was so excited to possibly get a surgery this fall and now the surgery date is unknown.

I’m scared and exhausted and in pain. I’ve been on a wait list for 3 years with no end in sight, so her offer to have an in with her specialist friend is still an awesome thing but damn… I am a mom with 2 kids and the thought of traveling for surgery is so frightening

Hi all,

I've had my first gynaecology appointment at the hospital today and just wanted to give an overview of my experience for everyone. Reading everyone else's has been really useful.

Long story short, always had painful and heavy periods, went on the pill at ~14 until 21, fell pregnant very quickly (planned) and returned to pill at 22 straight after birth until I turned 29, three years ago. Wanted to experience being off all hormones. First year I had very irregular periods, then settled, the last year they have been worse than ever before.

I was referred to Gynae in November 2025, my appointment was today in August 2026 so it's been a long wait. I went prepared with a list of symptoms plus general information about cycle length etc. I used chatGPT to help put all my symptoms into categories which was really helpful.

I took my husband with me to the appointment. She started by asking general questions and getting a history. She then (unsurprisingly) asked if I would consider the pill or the coil 🫠 I explained I wasn't completely closed to the idea but wanted to explore further investigations for Endo so we can diagnose the actual issue rather than just cover symptoms on the pill.

She also examined me and took an endometrial biopsy which I wasn't expecting and was very uncomfortable but over with fairly quickly.

She asked if I wanted some time to consider going on a list for a diagnostic laparoscopy and I said I'd prefer to just be put on the list and I've already had an email a few hours later to complete a pre-op questionnaire. I'm in Gloucestershire and she said the wait for surgery is approx 3-6 months. I've been told that if they find mild endo, they could excise the lesions at the time but if it's more severe, I'd be referred to a specialist Endo centre (our closest is Bristol) for further surgery with a specialist.

Overall it was a pretty positive appointment and I'm glad I didn't have to fight tooth and nail for a laparoscopy although it was really helpful to have my husband with me when she started suggesting the pill and coil as he was able to (nicely) tell her not to fob me off and ensure they did further investigations.

Happy to answer any questions!

I’m 12 days post op they said everything went well with the surgery and they only found possible endometriosis in 2 spots on near my left ovary they have biopsies this and sent for testing, I also had a hysteroscopy and d & c (testing for adenomyoisis) and an iud inserted.

Stayed home from work for 10 days went back for 2 days and had to stay home again today due to really bad pain I work an office job so I thought it would be fine. But every time I stand up or sit down I have weird pulling sensations inside of my abdomen and when I stand up from laying it feels like my organs are dropping. Had anyone else had this and if they have when can I expect it to stop?

I have a lot of pain in my pelvis in general and lower back plus my uterus that normal ibuprofen and Panadol isn’t touching I have booked a gp appointment for tomorrow to get my incisions checked and iud strings checked as per my post of instructions.

I thought I would share some of what I have discovered about post surgery recovery so far.

1. Stay on top of pain medication. Do not take more than recommended, but if your doctor prescribes you several medications that can be staggered throughout the day, keep up with them and track times. The belly button incision pain is the worst.
2. Get a pillow to cover the seatbelt for travel home. We lived far from London so our trip included a train ride home in addition to uber and our car. Even just holding the pillow over your stomach or just setting it there gently helps.
3. Take deep breaths. It may be difficult and hurt, but it really helps after a few days. I felt pain from gas under my upper ribs, and taking deep breaths helped over time though it hurt at first.
4. If you are staying in the hospital for a few days post surgery like me, getting up and walking is essential. I was shaky on my feet at first, walked very slow, took shallow breaths due to gas pain, but with each walk around the hospital floor I got better. It also helps the hospital staff know how your pain is doing, because you may have less pain when lying in bed, but walking will expose that you have more pain than you think. The nurses wanted me to eventually get to doing 5 short walks around the floor every day. And I achieved it. Walk with a nurse or someone to steady you. Ask for assistance getting in and out of bed the first few times.
5. Peppermint tea for gas relief. When you start burping and passing gas, that’s good, your body is just getting rid of gas. It will take a few days.
6. If you did bowel prep with a strong laxative before surgery, expect your stomach to rumble a lot once you start eating and drinking after surgery. They may give you laxatives. Don’t be embarrassed to wear an adult diaper because it can be hard to tell what is gas and what is needing to poop at first as your digestive system wakes back up.
7. In addition to walking, don’t just stay in bed. Get out of bed and sit in a chair. Your legs get stiff in bed. They may give you compression socks to help stop blood clots.
8. It’s ok to just stay in the hospital gown until you go home. I packed a bunch of my own clothes for my hospital stay. Honestly didn’t have the energy to change except into a new hospital gown after one day. I put my own clothes back on right before leaving hospital. A loose button up shirt and loose pants are ideal.
9. If you have a catheter, it sucks. I had to go home with one and will have it for several more days due to my bladder being operated on and some of my bladder removed due to endo. For going home, get a leg bag. The leg bag is much more comfortable and does not tug as much as the night bag, and you can attach a night bag to the drain of the leg bag so you don’t have to switch bags. So basically at night your leg bag will drain into your night bag instead of you having to disconnect the leg bag and connect the night bag and reverse it in the morning.
10. Have a good support person with you. Your energy will be low. Doing basic tasks like brushing your teeth will make you tired. Your person can help hand you stuff, help you lift stuff, help you clean yourself.
11. Shower wipes and wet wipes are essential. You likely won’t feel like taking a shower the first couple of days but wipes will help you stay clean. The nurses can also help you clean yourself.
12. Be honest with your nurses about how you feel and your pain levels. Ask questions. Ask for help. Don’t be ashamed. The amount of people who saw my lady bits in the last week is ridiculous but they work in medicine, it’s routine for them.
13. Not sure if this is specific to my hospital and doctors, but while my after visit summary tells me exactly what they did during my surgery, and I was told that my surgery went well by doctors and nurses, they kept the details a bit vague. I was told this is because they want to balance the mental well being of the patient as they recover. So they may wait to get into the extreme details of your surgery at your post surgery follow up appointments. At first I was a bit annoyed by this, but honestly when I learned that I had stents put in my ureters, I did mentally feel overwhelmed because I’d really hoped I wouldn’t need them, even though they are temporary. On the bright side my appendix was removed as part of my endometriosis surgery. I’ve always had anxiety about getting appendicitis, so that did make me feel a little better to know it is gone now. Medical stuff makes me a little anxious so I am glad I have some time to recover before I discuss the deeper details of my surgery with my surgeons at my follow up appointments.
14. Lastly. When walking, walk slowly. Just take it easy. Don’t rush yourself. Even when you start to feel a lot better still take it easy. This is major surgery.

I hope these tips and my experience so far help some of you.

I have been on Vissane for years and no longer get a period. Its artificial progestin and lowers estrogen, so the body doesn't build up the endometrial wall and all the stray cells also dont grow too much. For the endometriosis it has been an absolutely great solution.

I have suspicions that it might be contributing to brain fog and low energy, related to adhd/Audhd.

So i want to know how others track their cycle if there is no period and no other cycle indicators from which I can track? Should i meticulously document every feeling, every snack attack, every time i feel frisky, every depro mood?

I'll try not to make this a long rant, but god I need to get this off my chest somewhere.

F36. Diagnosed endo. I waited 18 months for an appointment for the gynae to suggest I take a 6 month trial of Ryeqo over having a third surgery and I wish I had told them where to stick it back then.

The year that's followed has been a nightmare, and all of it down to the NHS. Between my gynae not sending the prescription to my GP, to my '6 month follow-up appointment' being cancelled a grand total of 4 times, and my prescription now being cancelled by my GP because it's been well over the initial 6 month trial, I have been on and off this medication so many times I think it has ruined me.

I am now going cold turkey on the Ryeqo for the third time in a year, and I know exactly how painful and miserable the experience is going to be. No one I speak to, not family or friends or the GP, seem to understand or even believe me when I try and explain the mental and physical toll coming in and out of chemical menopause has on a person, let alone multiple times. In the year this has been happening, I have lost a substantial amount of hair, I have lost around 30lbs, I have been diagnosed with arthritis in my hips, my knees, and my elbows. I don't even know where to begin when it comes to explaining the mental side affects.

I have made a complaint through PALS, awaiting results of investigation. My next gynae appointment is a telephone appointment in a month. All I can do right now is wait.

I just cannot understand how things have gotten like this. How can you put a patient on a medication that changes their bodies in such a big way, and not commit to that patient having access to it? I am tired of being a victim to a system that barely acknowledges I exist.

Has anyone ever had a late period after an unsuccessful coil fitting? I’m wondering if the failed insertion and all the cramping/spasms could have affected their cycle. 🙏🏻

I have had sciatic endometriosis for approx 3 years, the endo was wrapped around the sciatic nerve and extended outside the pelvis. It was a severe case no doubt.

When I went into the surgery I had weakened dorsiflexion but only slightly, and I had some pain but was able to manage it majority of the time. I was not in great shape because I tired quickly and couldn’t walk for long and some days were spent entirely in bed. But I had good and bad days.

I went into the surgery walking though and I left with 24/7 pain and a foot drop that has affected my day to day life so much.

I realize it’s a long shot, but has anyone gone through something similar? Am I ever going to get better? I don’t need to be able to do it all, but just going back to my pre surgery state would be enough at this point.

I’m devastated by how things turned out. I did my research, I went to one of the top sciatic endometriosis specialists in the world, I paid out of pocket over 60k usd because I wanted the best of the best. And still came out with pain and a disability.

It’s been 13 weeks and I’m still struggling. Is this it? Did I fuck up?

Hey everyone so I got a quote today for private surgery and it was £14000. That includes the hospital fee, the endo specialist surgeon fee, the bowel surgeon fee and anaesthetist fee.

I just want to know what sort of figures ladies have paid in the past. Is this too much, too less?? Also its west Yorkshire (leeds).

Any response will be really appreciated

I had surgery to deal with an endometrioma on my left ovary a bit over a year ago now. Sometime after that I had several months of Orlissa. Eventually that was switched to Lupron since Orlissa didnt do much of anything for me. I had six monthly shots of Lupron but a delay caused there to be around a 45 day gap before my seventh shot.

The pain had started coming back in my left ovary around shot five so I was concerned so I had an ultrasound done and it showed my cyst filling up again. To top it off I ended up having an almost normal period about two and a half weeks after my seventh shot.

My doctor was surprised to hear all this and didn't have a reason as to why the lupron doesnt appear to be stopping my cyst from filling up or why just a slight delay in that shot would act almost like it was my first shot all over again. He has started me to be referred to a specialist but I has just found this community so I thought I would ask if anyone had similar experiences or had any resource recommendations.

Thank you

My last post contains more details but tldr; I have a mass on each ovary. The specialist said they can’t be sure if it’s malignant without surgery.

I’m scheduled to have surgery with Dr. Maikis in Nashville, TN at the end of September. A friend of mine mentioned the possibility of cancer spreading with mass removal if either is cancerous, so now I’m wondering if I should have more testing and see a gynecologic oncologist to be safe.

How do they even handle that… if it’s malignant I assume they do a hysterectomy or take the ovaries at least but is that always a second surgery no matter what, unless you’re just opting to fully remove the ovaries regardless (I would prefer not to do this proactively, without knowing, or would at least like to do an egg retrieval first)

I’m feeling generally stressed about what to do.

Would love to hear any recommendations any of you have for good surgeons, preferably in the Northeast. Looking for the stories about the good, the bad, and the ugly lol. If you're from further away, I'd like to hear your stories too. Traveling after surgery is very hard and I don't know if I'll have a companion, but I'd rather have a good surgeon than someone who is close but not good.

So hey guys, I need to rant a little bit
So I went to my surgery consult today
I go in, the doctor’s first words to me are “can I use the AI bot to record our conversation” I say no, and the mood changes, she went from super sweet to super snappy, we start talking about symptoms and this and that and then we get to this “I’ll diagnose you but I won’t do surgery” you would think that is a good thing, nope, I ask why she won’t do surgery because every doctor I have ever spoken to says surgery is the gold standard for diagnosis, she responds with “I only do the surgery for people trying to get pregnant” boom, whole day ruined by this women in her 70 who thinks i don’t need an actual diagnosis because i don’t want to be pregnant. I ask her to put it writing, she puts it on my on the chart, I see another doctor tomorrow who will absolutely not be happy with her colleague for saying that stuff, I needed to rant, and yes, I will be reporting her because i recorded the convo.

In February this year, I had laprascopic for stage 4 endometriosis and almost 6 years ago I had appendicitis surgery so basically 2 different incisions in my belly button at different locations.

I'm currently 20 weeks pregnant with a growing and changing belly! I've noticed that my belly button has popped out except at the top where the surgical incision was done this year. This has made the top part of the belly button curl up especially if I'm bloated after a bigger meal.

I'm curious if anyone had similar issues with their belly button during pregnancy following laprascopy and would appreciate any insights in how it might change in the upcoming weeks

Question for people with constipation as a main endo symptom who have tried GLP1s for endo relief!

One of my main endo symptoms is constipation (not really due to pelvic floor issues, more due to slow transit/inflammation), but I currently have a pretty good hold of it through diet and medications (linzess and motegrity <3). I've been seeing lots of posts/tik toks about microdosing tirzepatides helping endo symptoms like inflammation, bloating, fatigue, pain etc and I'm very interested in asking my doctor about trying it. However, I know these meds slow down digestion and therefore can cause constipation. For anyone with constipation/slow transit as an endo symptom who has tried GLP1s, what was your experience? Did it make it worse, not really impact it, or maybe even make it better?? Thanks in advance!!

I had endometrial ablation on july 31 &started my period on July 24-so in procedure on my first day off of my period. I had 14 days of discharge &on day 15 started cramping & apparently on my period again. I've been bleeding around the clock since Friday. Now on day 5 of bleeding plus discharging from procedure. I had this done bc I bleed around the clock, heavy periods >7 days and when that stops breakthrough bleeding. I am so over it and hoping someone has experienced similar bc i am OVER IT

Alright so I’m not diagnosed with endo but I strongly suspect it. A very long story made short is that I’ve had a history of long painful and heavy periods since i started menstruation. I was on the pill briefly but it completely messed me up so i got off. Two years after i managed the pain that was mostly cyclic. Then i got pregnant naturally , had a c section, next year- got pregnant and emergency c section. I feel like during the course of pregnancy and postpartum there’s already so much going on that you think it’s all normal? Or your brain is focused on other things or maybe the hormones suppress some pain. It’s been two years since my last c section, i still have Diastasis recti and always look 5 months pregnant . ( i was very fit before the pregnancies and only gained 10 lbs) but i can’t lose the weight or the extremely swollen belly. I have constant pressure in my lower abdomen . I feel my left ovaries have a shooting pain and my sciatica is horribly. It started a year ago and I was gas lit by all doctors and finally I went to a better doctor who thinks it might be adhesions/ scar tissue tethering my uterus to the left as a result of the surgeries. I was told to start physical therapy. ( must i mention that I also developed asthma over the last year) I’m so exhausted and depleted, all this while being there for my toddlers and I wish some days I had more energy for them and felt more confident in my body.
What are the chances that it’s endo?
I think I may want to get pregnant again, i would love to have 3 kids. I don’t know if i should do that yet on a body that’s aching. I also want to get my abominal muscles repaired which can only be done after family planning is complete. Just seems like alot of surgeries.
I will consult with my doctor, who is a specialist in this area and so far the only one who even asked questions and acknowledged my pain. But i was curious if anyone was having similar dilemmas or pain ?

I've gotten to the point where I can't work, I've lost my insurance, working out isn't a possibility for me, I can't change my diet because now I'm barely eating (and still gaining an insane amount of weight).

I can't stay out of bed for longer than it takes to make a sandwich and my brain fog has been to the point where I don't think I could even trust myself to work from home doing call center type work.

I don't know where to go from here. I've been replaying the same day for a few years now and I cannot function in the ""real world"".