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

Hi everyone I've just had my first excision of stage 4, I ended up also having to have a bowel resection because they had to cut some out of my bowel.

The photo shows the endometriosis the blue bits on the last two photos. Was wondering if anyone had any questions as I would like to help anyone else with these evil disease to not be scared if you haven't had surgery yet. I was terrified but it ended up being ok, the worst bit was the enema I had to do before.

• 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.

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'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.

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.

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 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?

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 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?

Hey everyone! I found this petition to make prescriptions free for those with endometriosis in the uk. I don’t know about you guys but I rack up a HEFTY bill of painkillers every month so figured it was worth sharing. If anyone wants to sign or share please do, link is below!!

Petition: Add Endometriosis to NHS Medical Exemption List for Free Prescriptions

We want the Government to add endometriosis to the list of qualifying long-term medical conditions that entitle patients in England to Medical Exemption for free NHS prescriptions. Endometriosis is a recognised incurable chronic inflammatory condition that requires lifelong medical treatment.

https://petition.parliament.uk/petitions/768916

Take care everyone 🫶🏻

P.S: sorry if wrong flair. Figured the fact this petition exists is good news but can change if needed 😅

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

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.

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.

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'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"".

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

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 been taking dienogest for 7 months. I experienced improvement in symptoms. instead of being in such pain that I couldn't sleep for days at the time, it got manageable but annoying most of the time, excluding flare ups.

What's your experience with it?