r/Endo

Honestly I’ve had it really. I have had clean ultrasounds and blood tests. Now I’m considering a colonoscopy to rule out anything back there. But the past year or so I’ve been getting butt cramps before and at the start of the period. This was so bad once or twice I got diagnosed with an anal fissure. But now I’ve notice the fissure acts up before or after my period. So technically it’s cyclical. Right now I’m on my period and my butt hole is literally in pain its cramping. It’s radiating to my stupid hip and my whole lower body is aching. I’m so glad I’m at home today. I have regular periods and no cysts so no pcos. I really don’t know what’s wrong with me and I don’t find going to the gynae helpful. One doctor asked me to have children to help with the pain. I’m 29 rn. I don’t want to go through childbirth if I can’t get through period cramps. I want to stop the period entirely but I come from a religious family and they’ve convinced me that BC will give me cancer.

I don’t know what to say to the gynae. What do I say? How do I get checked for endo?

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?

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 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.

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

I don’t know what’s going on with the heating pads I’ve been buying, but I swear they don’t get as hot as they used to. If anyone feels strongly about their heating pad, can you share the brand/model?

How severe is your bleeding during your period? I am diagnosed and I’ve always had very heavy periods, but it’s really getting excessive at this point. I’m on my period and have to stay home because I’m going through an ultra sized tampon or large menstrual cup every 30 minutes. That’s about 20mL every 30 minutes. This isn’t the first time it’s happened to me. Last time, it was like this and continued for over a month. Its only day two so far this time, but I’m already so fatigued and in pain and just over it.

So, how much do you all bleed and, if you bleed really excessively like I do, what do you do about it?

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!

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.

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

• PMID: 39241806
• DOI: 10.1093/humrep/deae207

Study question: Are there neurobiological changes induced by endometriosis?

Summary answer: Women with endometriosis demonstrate specific neurobiological changes distinct from those in patients with chronic pelvic pain (CPP) in the absence of endometriosis.

What is known already: Endometriosis is a chronic disease affecting women of reproductive age that presents with pain and infertility often accompanied by comorbid mental disorders. Only one study with a number of limitations has investigated changes in gray matter volumes and functional connectivity in a small group of patients with endometriosis.

Study design, size, duration: This prospective study recruited 53 women undergoing a laparoscopy due to suspicion of symptomatic endometriosis and 25 healthy, pain-free women. Clinical and psychological characteristics, thermal pain perception, and voxel- and surface-based morphology were assessed in all study participants. Thereafter, the patients underwent a laparoscopy, where endometriosis was either histologically confirmed and removed, or ruled out. Correspondingly, patients were assigned into the group with endometriosis (n = 27) or with endometriosis-independent CPP (n = 26) and compared to the pain-free controls.

Participants/materials, setting, methods: The study groups were generally representative for the population of women with endometriosis. Sociodemographic, medical, clinical, and psychological characteristics were collected using various questionnaires and a structured clinical interview. Thermal pain perception and voxel- and surface-based morphometry were assessed using thermode and MRI, respectively.

Main results and the role of chance: Despite comparable pain intensity and burden of mental disorders, both patient groups demonstrated distinct neurobiological patterns. Women with endometriosis exhibited increased gray matter volume (GMV) in the left cerebellum, lingual gyrus and calcarine gyrus, compared to those with endometriosis-independent CPP. Patients with CPP had decreased GMV in the right cerebellum as compared to controls. Dysmenorrhoea severity correlated positively with GMV in the left inferior parietal lobule, whereas depressive symptoms were associated with decreased GMV in the right superior medial gyrus across patient groups. Dyspareunia correlated negatively with cortical thickness in the left inferior temporal gyrus and left middle temporal gyrus.

Limitations, reasons for caution: The study groups differed in a few baseline-characteristics, including educational levels, smoking and BMI. While measuring pain perception thresholds, we did not attempt to mimic CPP by placement of the thermode on the abdominal wall.

Wider implications of the findings: Changes in gray matter volume associated with endometriosis differ from those observed in women with endometriosis-independent CPP. Our results underline an involvement of the cerebellum in pain perception and the pathogenesis of pain associated with endometriosis.

Study funding/competing interest(s): This work was funded by the START Program of the Faculty of Medicine, RWTH Aachen, Germany, and supported by the International Research Training Group (IRTG 2150) of the German Research Foundation (DFG)-269953372/GRK2150, Germany. S.T. was supported by postdoctoral fellowship of the Faculty of Medicine, RWTH Aachen, Germany. There are no conflicts of interest.

Trial registration number: DRKS00021236.

Keywords: MRI; cerebellum; chronic pelvic pain; endometriosis; voxel-based morphometry.

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.

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?

I got diagnosed with endo 6 years ago... completely by accident. I needed surgery for a massive fibroid, incl. a hysterectomy and ended up being on the table for an additional 3 hours because they did excision surgery on top after finding endo. Also later, explained a looot about the previous 15 years of my life being a menstruating mess.

Anyway, after the cleanup I had about 3 good years, and then it slowly but steadily came back. It started with random aches and pains here and there, and now turned into a full-blown monster with cramps, zero energy, constant pain, and even a little "menstruation" even tho there's technically nothing left to menstruate.

I have a call with a surgeon this Wednesday to discuss another excision surgery, but as the appointment gets closer and I'm preparing for it, I can feel kind of an endo imposter syndrome creeping in.

I read about people who have it so much worse than me (I was diagnosed with Stage I, but P3 in terms of how widespread it was), so the little voice says "is it really that bad?" (On a bad day, that answer is a lot easier.) And it was Stage I 6 years ago... It goes on with am I just oversensitive (my former Gyn's voice lives rent-free in my head). Or has the endo actually come back, or is this some completely different issue? Rationally, why would it be? But there's also no real way to know without surgery.

Years and years of not being heard (I was diagnosed at 31 and I'm 37 now) have really messed with my brain. I have all these weird little voices in my head questioning everything, and I struggle to stand up for myself - with myself...

Does anyone else deal with endo imposter syndrome? How do you remind yourself that this is all real, that pain shouldn't be like this, that you shouldn't be missing work all the time, that you're not oversensitive, or skipping fun things because your body is constantly exhausted?

So I was diagnosed with Endo via ultrasound last month. My right ovary is sticking to my uterus, yay! I also have adenomyosis.

I did take the pill for many years and never had problems, last year I went off the pill and it was horrific, I have everyday chronic pelvic pain. I did not take the pill for a few months now. Now I have crazy pain.

Now my doc ordered me to take Larissa, and I am on day 9. Dude, my pain is so bad now. It is even worse than before, especially when I sit on a chair. Does anybody else have that experience? When does it get better?

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!!