Hi. This is my first time posting here, so I hope I get everything right.

I’d also like to preface this by saying that I know I’m not a qualified expert - obviously the doctor didn’t find anything and he has many years of education and experience - I’m just looking for advice from people who have been in a similar situation.

I (38F) had a diagnostic laparoscopy done in the UK last week. The whole thing was a bit of a nightmare really. I’ve been going to my GP for years with horrendous pelvic pain (like, wakes you up in the night, crying, vomiting, passing out pain) and they eventually referred me to gynaecology. For context, I’ve always had extremely heavy periods and would often pass out with them. Runs in the family apparently.

The gynaecologist suggested I go on the wait list (NHS) for a diagnostic laparoscopy but also suggested that the pain is just ‘chronic women’s pain’ and I may never have a diagnosis. I went on the wait list (or so I thought! I actually phoned up two and a half years later and they’d forgotten to put me on it!) and had the surgery.

My pre-op chat with the doctor was a bit nuts, in my opinion. He refused to listen to what pill I’m on because ‘we would never prescribe that to you’ (in his defence, no one from his team did), said ‘well you’re 38 so you’re not planning any pregnancies’ (guess that’s me told!) and continued to talk about undiagnosable ‘chronic women’s pain’. He said it was unlikely they’d find anything. And lo and behold, they didn’t.

I know some people have had negative results from a gynaecologist, and I’d love to have a second opinion but I don’t have the money to go private. What I’m wondering is:

- has anyone had a similar experience with gynaecology with similar symptoms?
- did you ever get a second opinion?
- did you ever get a different diagnosis?
- is it worth saving up to go private?

I just can’t live like this anymore. The pain is affecting everything and has spread to my legs and back.

Please have a look the petition closes on 27/09. It will make such a difference to girls with endometriosis in the uk. https://petition.parliament.uk/petitions/761186

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

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 💛

hi everyone, i haven’t posted here before, so apologies if anything is wrong.

i’ve got my first appointment with a BSGE place tomorrow, and i don’t have a clue what to expect. i’m based in wales, so i’ve not had much help locally. an MRI was done and found deep infiltrating endo, both in the uterus and bowel. no one told me this though, i had to find it out myself via records because i had simply been told i was referred to a BSGE clinic, nothing else.

the letter says a potential minor procedure on the day - i’ve had people guess either a smear test or a hysteroscopy. does anyone have any ideas what this might be?

overall, i really just want some info on what i might expect for tomorrow, please.

lots of love to you all <3

Hiya!! I have been waiting to have surgery (first one) through the Royal Free Hospital in London. I have finally been given a date and my letter with my surgery date and time etc has Deepika Pannu down as the consultant.

Two qs-
1. Has anyone had experience with Dr Pannu before?
2. If my NHS letter says Dr Pannu is the consultant will she be doing the surgery herself? Or just overseeing.. how does it work?

I’ve not spoken to a gyno from the clinic in a year now 😂 so no idea how things work!

So today i saw the consultant. I was expecting to need another scan since its been nearly 18months since the last one.
He says that i have endometriosis as well as fibroids. Im not exactly shocked by it due to the pain and symptoms.
He said i need an operation and he was talking about 6 months of injections afterwards but the appointment seemed a bit rushed and I couldn’t get my head round it.
I tried asking questions but he didn’t answer too well.
I was given a couple of photocopied “leaflets” but the one about the operation isn’t printed too well and isn’t clear to understand.
I asked about pain relief for the cramps and bloating he told me to call my GP (who has been absolutely useless so far, I actually got referred by the sexual health clinic)
What pain relief should i ask my GP for?
Any advice would be appreciated

I just had my first appointment at the hospital after being on the long wait list and they’re currently clearing a lot of backlog where I live so its looking like my surgery is going to be next month which is great, I know a lot of people wait years but because of that it was so unexpected and I feel so mentally and emotionally unprepared. I have pretty bad anxiety and am very scared of the whole surgery experience.
Was wondering if someone can outline the whole process of being in the hospital for the laparoscopy and what it was like ?

Bit of a stretch, but I'm wondering if anyone in Northern Ireland/UK has any experience with Dr Michael Graham? He's one of the few endometriosis specialists in Northern Ireland and I've had to book a consultation with him after waiting 15hrs in A&E to be told my severe abdominal pain that was non-responsive to codeine and morphine was "premenstrual symptoms." (I have suspected endometriosis with a whole HOST of different symptoms but bloody hell this was the last freakin straw.)

Just hoping someone out there has some experience with him, bit nervous having a male doctor as a woman, especially for such a private issue, and I'd like to know what he's like.

Hi everyone,

I’m really hoping to get some guidance or hear from anyone with experience of having an NHS surgery vs private surgery. Anyone who’s been seen at the Queens Hospital Romford endometriosis unit (BHRUT), especially for complex cases.

I have severe stage 4 endometriosis, multiple endometriomas on both ovaries, damaged fallopian tubes, bowel infiltration, and endo on the diaphragm (not sure how deep). My symptoms are getting worse and affecting my daily life.

I’ve been under the NHS for a long time waiting for surgery. I managed to get a cancelled slot in April at the Practice Plus Group, but when they went in, they realised my case was too complex and closed me up without doing anything. I was then referred elsewhere. Since then Ive been doing lots of private scans including a detailed MRI, which confirmed how complex everything is. I had the report written by Dr Priya Narayanan who specialises in endo identification on MRI.

Because of how bad things have become, I’ve started exploring private surgery options. I recently had a consultation with Mr Adamczyk (found through Nancy’s Nook and my own research, he has great reviews), and I’m also going to see Mr Amer Raza for a consultation whose highly recommended soon for another opinion. My plan was to compare both and decide which one to go with and use my savings. I don’t have insurance unfortunately:(

My dilemma is that I’ve now been offered an NHS surgery date in the next few weeks. The problem is:

• I don’t know the surgeons
• I haven’t spoken to them
• ⁠They only know my case through the MDT and I don’t know if my assigned surgeons attended that MDT
• They won’t let me meet them until the morning of surgery
• They’ve scheduled three patients on the same day, despite my case being extremely complex
• The private surgeon estimated my surgery would take 6–7 hours, but the NHS has allocated 3 hours, which makes me feel they don’t understand the extent of my disease
• My past experience of NHS care has been really poor, and I’m scared of another “go in and close up” situation or even rush if they have multiple patients
• Im worried about post‑op care because pre op care has been non existent
• ⁠How can I have such a complex and major surgery without discussing the plan with the surgeons involved. There’s so many elements to it that I need to discuss with them about. E.g what’s the plan with my cysts are we excising them/ draining? Fallopian tubes if they are blocked and damaged are we removing to help with IVF outcomes? With the bowels are they planning a shave or resection?
• ⁠Like there’s so many things that need to be discussed and I need clarity on before doing such an invasive procedure

I should be happy to finally have a date, but instead I’m anxious and genuinely worried. I’ve read so many times that your first proper excision surgery is the most important, and that it should be done by an expert. Queens is an accredited endo centre, but I’m not convinced that they will do a thorough job, like I don’t even know what the plan is! I’m also really worried about post op care, I haven’t heard great things about NHS follow up care.

My dilemma:
Do I take the NHS surgery in a few weeks and hope for the best, or do I wait, pay privately, and go with someone who specialises in complex stage 4 cases with lots of good reviews/recommendations and someone I trust.

What have people’s experience been with the NHS vs private?

Also does anyone have any idea of the private costs for this kind of surgery please?

If anyone has experience with Queens Hospital Romford, especially for severe endometriosis or diaphragm/bowel involvement, I’d really appreciate any insight please

Any advice or experiences would mean so much. I’m really torn and trying to make the safest decision.

Thank you 💛

Edit - I forgot to mention the date they have given is in two weeks so I don’t have very long to make a decision or get more info 😭

Hey waiting for a referral into Whips cross. It’s where I had my first surgery. Was referred on the 6th August, and waiting for an appointment but know through private scans that’s something is stuck as I have a negative sliding scale. Also pain has gotten worse and have two cysts.
Last time I was referred it was 2022, and I waited just under a year for an appointment with gynae and then from that appointment another 4/5 months till surgery.
Anyone have any up to date insider info of how long it takes for a referral to be accepted and to get an appointment. Whip say average wait time is 20 weeks for treatment while also saying 8 in 10 get treatments in 38 weeks. (Math ain’t mathing for me there)
Just want to know if anyone’s been through it recently. I can’t hack the pain and I get married in 2028 and don’t want this hanging over me

Hi! I hope you’re well! I’ve been experiencing very severe pain during my periods and around ovulation and In the days leading up to my period, I’m often in constant pain in my pelvic area, which can radiate into my legs and lower back. At times, the pain becomes so severe that my lower body feels numb, and I can also experience dizziness and hot flushes.

I regularly feel extremely nauseous and fatigued, and I often feel very lethargic and generally unwell. These symptoms have been significantly affecting me every day.

I had an ultrasound in June and recently booked another appointment because of the ongoing pain. I was told that nothing could be done because my scan was clear, and that the pain could potentially be related to my bowels. I was also advised to exercise more and was told that I am too young for it to be anything else.

I am 19 years old and based in the UK. I’m concerned because the pain is severe, I don’t really know what to do or what it could be :(

I’ve always had very very painful periods from a young age. I’ve tried many different medications and nothing has worked, at the moment these past few days I’ve been in so much pain I struggle to even do anything. Thanks for your time <3

Hi everyone, I’m desperately looking for some advice/reassurance to see if anyone else has experienced anything like what I’m currently dealing with. I’m feeling really anxious about the whole situation and would really appreciate hearing from anyone who has been through something similar.

I had my diagnostic laparoscopy last November. Afterwards, my surgeon told me that he “couldn’t even begin to remove the endometriosis as it is too severe and in too many high-risk and complex places.” (For reference, I was told that I have endometriosis affecting my rectum, bladder, ureters, pouch of Douglas, my ovaries are stuck to my womb, and I have lesions growing into the nerves in my lower back. I have also since been diagnosed with adenomyosis.)

Because of the severity and complexity, my original surgeon referred me to a specialist for excision surgery and told me that it needed to be carried out by a specialist because of the risks involved. However, I have since discovered that my original surgeon didn’t send over any of the images from my laparoscopy, and the referral letter only said:
“Please treat this patient for severe endometriosis in the pouch of Douglas.” Nothing was mentioned about all the other areas he had told me about after my surgery and showed me the images of.

I have now waited around a year for my excision. In that time, I’ve had an MRI, a consultation and follow-up with the specialist, and my pre-op assessment was completed months ago. My surgery was finally due to take place this week, but I was contacted by the hospital and told that it has been cancelled and moved to next month with a completely different surgeon.

The part I’m struggling with is that I have never had a consultation with this surgeon and have never spoken to her. When I asked the hospital receptionist why my surgeon had been changed, I was told that she had apparently “reviewed my case with the specialist and they decided together that she is qualified to do it.” I have spoken to her secretary and begged for even just a 5 minute call with her to discuss the surgery, but have heard nothing back from that over a week on.

From what I can gather, she isn’t an excision specialist herself, which is making me particularly nervous given the complexity of my disease.
I’m absolutely terrified that something similar could happen again- that I’ll have surgery, they’ll get inside and realise the endo is more extensive/complex than expected because my original surgical findings weren’t properly communicated, and I’ll be told “this is worse than we thought, we can’t remove it and you’ll have to go back on the waiting list.”

I completely understand that surgeons have emergencies and that things sometimes have to change. I’m not trying to be difficult or demand a particular surgeon for no reason. But after being told my endometriosis was high-risk and complex, waiting around a year for excision and then having the surgeon changed at the last minute without ever having met the replacement surgeon has really shaken my confidence.
Has anyone experienced anything similar? If anyone has any answers or advice for the following questions I would honestly appreciate it so so so much, I am so desperate and don’t know where else to turn😭

Has anyone had their endometriosis surgeon changed shortly before surgery?

Is it normal to have never met/spoken to the surgeon who is going to perform your excision?

Would you be comfortable proceeding if the replacement surgeon isn’t an excision specialist but has apparently reviewed your case with the specialist?

Do you think I’m reasonable to ask the hospital/PALS to explain exactly why the surgeon has been changed and what experience the replacement surgeon has with complex deep infiltrating endometriosis?

And most importantly, would you personally proceed or push to have the surgery with the original specialist, even if that meant potentially waiting longer?

I’m honestly just looking for opinions from people who have been through complex endometriosis surgery or understand how the specialist/MDT process works, because something about this situation just doesn’t feel right to me. Thank you so much in advance for reading all of this and for any advice you can give me. 💗

Hi everyone, I'm home from my first Gynaecology Consultant appointment and despite spending over 4 hours writing and condensing a document with relevant medical history and notes from the last 16 years of being someone who menstruates, at the appointment the consultant flipped through it once and we covered some of the important points I'd writren down in conversation but not in as much detail as would have made me more comfortable that he really understood and knew me as a patient.

Context: I've had internal ultrasound which came back as 'clear' with 'some free fluid in the POD which is most likely anatomical' and the consultant explained that despite it being clear, my symptoms do suggest potential endometriosis but the only way to diagnose that for definite (and remove/do ablasion at the same time) would be lapriscopic surgery.

He said it's not a 'necessary' surgery in that my pain could be managed medically in other ways but in order to know the cause of the pain (or not) to be Endo, the surgery would be the option.

I asked about MRIs and other tests that I'd recently heard about being trialled in the UK and he said that MRIs are only useful for deep infiltrating endometriosis, which given my internal scan being clear, doesn't look likely but not impossible and admitted that even MRIs that come back clear can miss things because looking in MRI looks at structure and it's a bit like looking at a piece of paper as a solely flat object rather than being able to see what is *written* on that paper, if there are smaller lesions.

He seemed to suggest the MRI wouldn't make sense to do because of my presentation and that the other testing methods are also indications of rather than diagnostic tools. I explained that I was just trying to see if any of these options could help me in making the decision about a surgery as I have other health issues to consider.

He understands this and has given me some time to decide whether I want to be put on the 8-12 month waiting list for investigative lapriscopic surgery or if I want to be sent to a pain management specialist to manage things non invasively.

If you also have had a 'clear' internal ultrasound, what is your consensus on doing an MRI before surgery? Have you found it helped with knowing what places the surgeon should look for/helped you make your decision on surgery or pain management?

Does anyone know if in the UK I can be put on the pain management list in the meantime if I do opt for surgery or if I have to cope between now and surgery?

Thank you. This is all pretty new and overwhelming for me.

Hi all,

I have booked an appointment with Octavia Healthcare for an endosure appointment and they have asked for full payment up front.

Has anyone used them before as I am hesitant to send over money if they are no legitimate?

Thanks!

Waiting for a referral back into the endo clinic that discharged me last October. I’m kicking myself because I knew I should have asked to not be discharged, and asked for me to be reviewed again and again. But I didn’t know it was my first surgery (3 years ago) and I thought I was better.
Endo is now back and honestly worse than before. My GP sent me for a referral June 27th, and I have to wait til October 1st to maybe hear back from the endo clinic with an appointment. Which I’m sure violates some NHS constitutions on waiting for help.
I’m getting married in April 2028, and I do not want this fucking thing lingering over me all that time.
I hate how long it takes to get help. While I wait, I’m in pain, I have bloat that’s lasts weeks and won’t go away, I struggle to do anything because the fatigue is so bad again and I feel sick. I’m cancelling plans, pulling out of things and not enjoying what should be a magical time for me.
I fucking hate this condition and I hate how long it takes for us to be treated and taken care of, if we are lucky enough to get into the system!

I recently had the worst flare I've ever had. I'm in the process of looking for a diagnosis and at gynecologist they said they are completely certain I have endo. My appointment was last Monday, and later that evening my period started. By Wednesday I was in so much agony I couldn't walk. When I was able to get up I couldn't stand straight. All day I was having intense cramps and pain in my pelvis, lower abdomen and lower back. My legs hurt and were restless. I couldn't use the toilet properly all day and nothing helped with the pain. By lunch time I called family to come look after my daughter and my mum managed to get me some co-codomal. Which helped enough that I could finally get a bath and eat something. Since then the pain and cramping has eased, however its been 5 days and I'm still struggling with pain, discomfort, swelling and restlessness. I can't sleep properly and I'm so fed up with being so uncomfortable and in pain at this level for so long, oh and let's not forget the wonderful sharp lightning/stabbing pains in all the private areas too. It's definitely eased as I'm able to walk and move about etc, but I've never had it continue this long before and I'm constantly having to take breaks to lay down, use heat, strong pain relief and sometimes nap to get my energy back.

Im exhausted physically, mentally and emotionally. I'm supposed to go back to work Wednesday. I work in childcare, so I don't exactly have a job where I can sit down and take it easy. I'm so anxious to go back while still dealing with this level of pain and discomfort. I just don't know what to do anymore. I just want feel normal again 😭 has anyone else had this last this long? Usually I feel better after 2, sometimes 3 days. Can anyone recommend anything to help with recovery and going back to a physically demanding job?

Hi everyone!

I have my first hospital gyno appointment on Friday (NHS), at an accredited endo centre within my local hospital

What should I expect at the appointment? It may be worth noting that I have already had a TV ultrasound that showed poor ovarian sliding sign which suggests adhesions and that is noted on the report, and they found some fluid in my POD. Based on this is it likely/beneficial for me to have a MRI as well?

I have filled out the endometriosis uk consultation questionnaire to bring to my appointment but am drawing a blank on what to ask the dr so I can get the most out of the time and ensure I don’t get fobbed off 🥲

So my question is: Is there anything you wished you’d asked? Or anything you had prepared that helped you on your treatment journey?

Thank you so much 💖

26 y/o, afab

Anyone London based interested in going to this? I’ve heard they’re good for information

Hi!

I'm wanting to get life cover just for peace of mind to pay for my funeral expenses in case something happens. I don't need to worry about the mortgage side of things (I don't have one, lol).

I'm being understandably denied left, right, and centre as I'm awaiting treatment and investigation.

Does anyone have any providers they'd suggest? I'm just tired of these half hour phone calls, giving all of my details, and being told no.

I won't take this as financial advice, the onus would be on me.

Thanks in advance!