tldr (summary) 1 - im looking for any advice/ some reassuring/ validating/ seeing im not alone as im shitting bricks for my upcoming appointment following an abdominal mri months ago to rule anything out before possible surgery, and i have ptsd (which is heavily related to my fears about this appointment and possible surgery) , autism and quite probably some medical trauma.
longer version/ context - im 22 and have had every endo symptom in the book since my first period and obviously has gotten worse and worse over the years, ive been going to GPs since i was at least 13 for extreme period pain and have been put on many different meds including NSAIDS, birth control, all the usual and nothing has ever helped. i also have PTSD due to sexual assault and abuse trauma and ASD so they make me more nervous about appointments for obvious reasons. more recently i have been more insistent on something being wrong and that i need to be listened to and believed and investigations need to happen.
so i had another gynae referral to a male consultant at a private hospital, about october-ish last year. The appointment was extremely fast, i came in he said so you think you have endo and i said yes, he asked if i had pain during sex, painful bowel movements and that was basically all he asked about symptoms.
i said im on the evra patch birth control as i went to another consultant privately (it went horribly i wont go into detail) prescribed it to me and said i had no other choice and that i had to, i did not want to, i hate the hormones, but ive been on it for a year and a half and i bleed every single day since, and the pain is still there but i can function and work with the pain most days of the month so i continue to use it because without it i cannot work as the period pain is so horrendous. i tell him she did an ultrasound and all she said was that i have a retroverted uterus, (she tried to force me to do a pelvic exam but i explained prior that i have diagnosed PTSD and absolutely cannot let her do that she was horrible to me about it).
He asked if i have any other conditions and i said ive recently been diagnosed with fibromyalgia and said what medication im on. I forgot to mention i have autism as i was so scared and my brain just forgot it haha, i dont know if he has me medical record and already knew? but i did not mention it.
He then after those few questions that took maybe two minutes said he was ordering me an abdominal MRI, and depending on the results of that, that i may need a laparoscopy. I had the mri last year in december and my follow up appointment is on the 20th of may in a few days. I assume he will tell me the results of the mri and i have no idea what else.
Im terrified. for so many reasons, what will the mri show? what will it mean? what if he just says it showed nothing or something and i dont think its endo? what if he says i need surgery and then i get a date for the surgery and i have no fucking clue what it entails, what will happen, the process of it all? obviously i have been researchign and learning about endo since i was 16 but i am so scared of surgery and any internal things like pelvic exams, like what if i have to have one before the surgery? I know you have a bladder catheter for surgery i think? Will that HAVE to happen when im awake? that is almost out of the question for me i couldnt go through that. And i know you have to pee before you can leave after the surgery and if you cant they have to put the catheter back in and ill be awake i cannot cope with that, that thought terrrifies me to my bones. And im pretty sure while youre under they have to go in your vagina to move your cervix and uterus around to see around it am i correct? i know ill be unconscious but ill wake up knowing that that happened and that will be a triggering thing i am so scared to feel that way knowing that happened.
But ive wanted this surgery since i was 16 and i might need it? What if it comes to the surgery and its not endometriosis and it actually HAS been all in my head for the past ten years and im just sensitive or a baby who cant handle the pain everyone else can ignore. but i also know that some people have three surgeries before they find stage four endo was hiding there all this time and the doctors keot missing it and not looking correctly. I think the thought of it not being endo is the most awful thing that could ever come of this because then it will mean ive been wrong this whole time and i genuinely am just a wimp, i dont know how ill cope with that.
Im crying writing this im so scared and i dont know what to do. Im also scared that i will shut down during the appointment like last time and forget to ask the questions or he will make me feel small, im a nervous person with ptsd and obviously autism and male doctors terrify me, like what if he doesnt answer my questions or answers them in a way that doesnt make any sense or shrugs my concerns away. My best friend will be going with me so i am going to come up with all of my questions and write them down and give them to me and them incase i forget or am too scared. and what if i have to have the surgery but no one cares about my concerns. I realise i must have some sort of medical trauma from all the doctors who have laughed in my face over the years, crossed my boundaries and told me its all in my head and the pain is just something you have to live with or to have a baby at fucking 14 so it reduces the period cramps after having a baby, i know im not the only person in this forum who has been told that surely. I also feel like if i say yes (if i even get the choice) to the surgery im also saying yes to the possibility of them finding no endo (whether that’s because i don’t have it or they just don’t find any) and like i’ve said im terrified of that too, not because ill be ‘wrong’ im not scared of being wrong, just scared that it will have been ten years of going to the doctors and being dismissed for nothing, and will mean there is no answer for the pain i feel so it will feel like it really has been in my head this whole time and i just have to move on still in insane amounts of pain for the rest of my life with no solution.
FINAL TLDR (summary)
Im just asking for advice from people who have been through this process, and can help answer any questions, or reassure and affirm that my fears are valid and okay and i am in control of what happens to my body :(. And that i am strong and able to stand up for myself and advocate for myself. Im so bloody terrified i just want someone to hug me and hold my hand and tell me it is going to be okay. Im so sorry for this awfully long post i just dont know where else to turn to im so so afraid. If you read all this thank you so much :,( <3
edit- rereading this a few days later i was definitely spiraling and freaking the fuck out, but getting it all written out has really helped me process exactly what my fears and concerns are, and after reading these replies and talking to the endometriosis uk chat helpline, i genuinely feel so much more sure of myself and confident that i can do this and stand up for my pain and also my boundaries. thank you so so so much if you read or replied to me you have NO idea how much it means to me, i have never felt support and community like this, i love you all <3
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velvetonion
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I am really sorry for what happened to you and that you had to go through it all alone for so long. Your concerns are absolutely valid and being terrified of the diagnosis, treatment, unknown, surgery is nothing out of the norm.
I will try to answer as many of your questions as I can. I hope you will find it useful and reassuring.
Starting with your questions about MRI:
It may be that MRI won't show anything even if it is endo. Endometriomas are growing on the surface of organs, where they leave scars behind. These scars are extremely hard to find on the mri. MRI is not the best tool to find endo, but a great one to exclude other options (like tumors or unusual anatomy), so even if your MRI doesn't show endo or is inconclusive it won't mean that your pain isn't real. The golden standard of diagnosis for endometriosis is a laparoscopy, because it is easier to find scars with your naked eye. One of the criterion for a laparoscopy is also a failed hormonal treatment - I bled for months on my pills and refused to take them any longer. That's how I "forced" my gynae to refer me to the laparoscopy. Have you told your gynae about your constant bleeding?
I didn't have a pelvic exam before the surgery, because I believe there is no need for it - they will look inside your body, so there is no need for palpable exam. I don't remember having a catheter or anything about it. It may be worth telling all of your concerns to your surgeon - about the PTSD and how you feel about catheter for example. They can always work around it. Remember that those people who are performing the surgery will believe you and your pain. They see people gaslit for years, unsure and in constant pain all the time. My medical team was the first group that validated me after years of "periods are always painful. It is just being a woman".
They don't move your vagina and cervix during the surgery - they fill your belly with gas so they can see everything around. Everything is done through your belly as it is easier access this way.
Peeing after the surgery is pretty easy if you drink a lot. And I mean a lot. Again - if you refuse to have the catheter, they can't force you. It is your body and your decisions. 🤍
Even if your surgery won't confirm endometriosis, it doesn't mean your are a baby, who can't handle the pain. It can show two things:
1. It is not endometriosis, but another very painful disease, that needs attention, diagnosis and treatment to increase your quality of life. It doesn't have to be endo, there are many painful diseases out there! Maybe try thinking about the surgery as a part of the diagnosis, rather than a way to ablate all the endometriomas. This can take the pressure off and be just another step on the journey. I found it easier to think about it this way.
2. It is endometriosis, but they didn't find it on this occasion.
Please note that none of these options include you being a wimp. 🤍
I hope you found some answers here, but please ask more questions if you have them. I will do my best to answer them.
thank you so much for your response it helped more than you will ever know <3 he actually is 99% sure he found endometriosis and chocolate cysts on my mri!!! and ive got a surgery date for excision in july! on the nhs! with an endo specialist! it had been a heavy few days holding the grief for my younger self who was begging to be believed but the best day of my life knowing im not crazy and i have been right this whole time that something is very wrong. with your help i went in there and asked every question i wanted and even though he was lovely and i didnt have to stand up to him, i was still very brave thanks to you guys who replied <3
Hey velvetonion. First of all, I'm sorry that you're going through all of this and that you've had to advocate for yourself so much. No wonder you are struggling! It's not surprising that you feel this way.
Second, it sounds like you're in a bit of a spiral right now. You're extremely worried and anxious and not knowing what's going to happen to you is making things worse. Try to take a few deep breaths. Is there anyone you live with or you know who you an confide in? I think it would help if someone was with you right now. But if not, don't worry! The community here is very supportive, and most people here have been through very similar things to you.
Third, if you can, I think you should ask for female doctors in future. You have every right to ask to be seen and treated by female doctors and nurses with your history. You can even call the place (or get someone to call for you) where you have your next appointment booked and ask for a female doctor. You can also ask for a chaperone if your friend ever can't go with you. I like that your friend is going with you and that you are going to write everything down so you don't forget it. I do the same thing! I also get mega flustered and forget everything I want to say once I'm sat down in front of the docs. Also, nurses are often the best people for support I find! I had a colonoscopy last year that I was terrified of, and the nurse next to me held my hand and talked me through the whole thing after I told her I have severe anxiety. She was wonderful. So if you go in for surgery at any point, take the time to explain your feelings and your history to the nurses. They will have more time and care than the doctors do.
If you have the MRI and it doesn't show anything, that doesn't mean you don't have endo. An MRI will sometimes show deep infiltrating endo, but not always, and there needs to be a specialist looking at the MRI to see even that. Have you asked to see someone who is an endo specialist? If you can find a credited BSGE centre, even better!
I haven't had the surgery yet as I'm also still waiting for an MRI and diagnosis, so I'm not 100% sure about the catheter stuff, but I'm certain someone here will be able to answer that question. I asked a similar question about the breathing tube you get during surgery as I was terrified of waking up with the tube still in! I asked the question here and EVERYONE reassured me that I would not wake up with the tube in. I felt so much better after that!
You're not a wimp, and none of this is in your head. It's mad that we have to advocate for ourselves so much, but sadly none of us are strangers to that! I promise you will be okay. Try to keep calm for now. Do something you love to keep your mind off things. If you ever want to chat or rant to someone, please feel free to message me 💜
thank you so much for reading my post and reassuring me, i absolutely was spiralling and you helped remind me that i am in control and everything will be okay , i really appreciate you<3 your words and advice were so incredibly kind :')
i had the appointment and he told me he actually is 99% sure he found endometriosis and chocolate cysts on my mri!!! and ive got a surgery date for excision in july! on the nhs! with an endo specialist! im not crazy and i have been right this whole time that something is very wrong. with your help i went in there and asked every question i wanted and even though he was lovely and i didnt have to stand up to him, i was still very brave thanks to you guys who replied <3
I hope your mri goes well and if i can ever help you at all in any way please feel free to message me as well <3333
So glad you've got some answers! That in itself is a big help. Thanks lovely. Fingers crossed for your surgery! We're always here if you need support in the future ❤️
hunny I like you was absolutely terrified last year when I had my lap I had never had general anesthetic at all I was worried I would wake up during surgery or not wake up . These are all valid hun. The nurse explained that the medicine now used is so much safer and honestly when I came round from the surgery the first time round I felt like I had honestly had the best sleep ever. For diagnostic lap was under probably 1-1.5 hours so not very long but I was in recovery for a while. This time round my surgery was 3 hours long and I was then in recovery 3.5 -4 hours . Before I had my excision surgery the anesthist came round I had to have the consultant anesthist as my blood pressure I have inherited is very high and so is my cholesterol. So she had to take precautions thankfully my mum was with for my pre op and three days before surgery was put on blood pressure tablets if I hadn’t had these tablets even though it was still high on the day it had come down considerable from my pre op if not my surgery would have been aborted as wouldn’t have been safe. Hun I just want to reassure you I was s assaulted on three different occasions police envolvement etc I don’t like being exposed I feel very vulnerable and that is even with a lovely team who looked after me. So just to reassure you you will be in safe hands during a lap etc there are lots of staff looking after you before and after. As said yesterday hun anything any time as at the moment off work from my op I am available any questions etc even when I do go back to work will make my self available for you.. take so much care sweetie ❤️ xx
thank you so much for your replies cocao <3 your words calmed me down so much and reassured me that i can do this just like all of the endo warriors before me <3 you are so incredibly lovely thank you for everything <3
i had the appointment and he told me he actually is 99% sure he found endometriosis and chocolate cysts on my mri!!! and ive got a surgery date for excision in july! on the nhs! with an endo specialist! im not crazy and i have been right this whole time that something is very wrong. with your help i went in there and asked every question i wanted and even though he was lovely and i didnt have to stand up to him, i was still very brave thanks to you guys who replied <3 i will have to have a catheter and there will be some internal parts to the surgery to move my cervix around and i am definitely very scared about that part and waking up and feeling violated, but ive wanted this surgery for so long and so many other women have been through the same with the trauma i just have to remember that and be as brave as i can, at least he reassured me that i will be unconsious when all of the private parts happen so theres that. thank you again <3
hunny you won’t wake up with the tube in they take that out they may wake you up but I don’t remember when you have excision surgery which is more complicated and more complex than a diagonostic lap you only then have a catheter but they take that out the morning after surgery . If it’s just slight excision and maybe just draining a cyst then you wouldn’t have a catheter because i didn’t on my day case lap if it’s only minimal then they do treat there and there but also if it’s too deep then they have to plan for that surgery. So hun rest assured you will be ok 👌. With a lap hun as they do key hole normally they won’t go from down below up . They look inside using four Insitions one in the belly one on your super pubic area and two either side your belly button on your hips stroke pelvis area . Hun I hate internals etc I was sexually assaulted a fair few times when I was younger the last one was six years ago which prompted me to move house and area as I couldn’t go through all that I mentally was really hard and I had to deal with a lot of that trauma and not being believed. Thankfully though I have got through it but it takes time and healing honestly I feel internals so intensely that if it hurts that much I tell them to stop 🛑 as it can be triggering but as I’m older now am able to try and put that in the past and try and think positive. The other thing that helped me a lot was not to have a partner at all from that experience and the experiences before so I don’t have to feel pressured into things I don’t want to do . If my knight in shinning armour does happen to come around they really would have to one be patient and two be very kind. Three he would have to like animals as I have five fur babies two kittens and three rabbits. Hunny honestly please try to not over think things at this time . I know it’s very hard not to to jump to conclusions and too irrationalise things . This is the unknown hun as you do want answers to validate your symptoms this is perfectly normal but with our heightened awareness it’s tough . Please take some one with you to your appointment so there are four ears 👂 and not just yours listening. The thing is we jump to conclusions before they happen. Of this gynecologist has a specialist intrest in endo you will be fine rest assured they will know what they are looking for. If it’s just general gynecologist they miss things and if it’s just general radiology gist they will miss things so that isn’t you it’s them because they don’t know what there looking for. For an mri as I get clostraphobic I asked to go feet first in mri and head out so I wouldn’t feel so closed in. This helped me. But the noise was awful the music did not drown out the noise for me . I felt like a hundred bullets were going over my head and after being on the mri for one hour I did suffer from severe migraine when I got out of there as my body have been overloaded sensory wise. Take care hunny .
Hi Velvetonian - firstly, thank you so much for sharing your experiences and worries here. I know how hard this can be and really relate to all your concerns about internal examinations. I also know how hard it can be sometimes to get medical professionals to respect your boundaries, as I also live with medical trauma that makes gynae appointments near impossible.
In terms of boundaries, the biggest thing I’ve found that helps is to put my boundaries in writing, via email, and ask that this be added to my medical record. You can do this in advance of any appointments and they have to do this. Also make sure you include the word ‘consent’ in your statement e.g. ‘I do not consent to having a catheter during surgery or while I am awake…’. Have a think about things that you know you absolutely don’t want to have done to your body, or under what circumstances you don’t want them done. I’ve found this approach much more successful than trying to state what I do/don’t want during the appointment, partly because I’m more worried then, and partly because doctors don’t always listen to ‘no’ even though they should. I also find it helps me attend the appointment with more confidence that my trauma support needs will be respected. Putting it in writing seems to make them take me seriously.
In terms of the laparoscopy, it’s great to hear from some of the other ladies here that vaginal examination isn’t essential to this procedure. However, be aware that this does vary by surgeon depending on their technique - my surgeon was clear with me that she does use instruments in the vagina during laparoscopy. For this reason, I refused having a lap and had an MRI instead, which in my case did show endometriosis in several areas. For now, I’m managing this with meds, but should I need surgery I will of course find a surgeon who doesn’t use instruments in the vagina during a lap. It’s definitely worth asking this question to your consultant.
In summary - remember these three things:
- You’re not a wimp - your pain and trauma are real and you’re incredibly brave and powerful living with them every day.
- You have the right to trauma-informed medical care. Supportive medical professionals who understand this can be difficult to find, but it’s absolutely worth taking the time to find them as they will make a huge difference to how you feel about your care.
-It’s your body and you always set the boundaries. I always remind myself ahead of any gynae appointment that if I feel at all unsafe I can just walk out. That’s my right, and it’s yours too.
thank you so much for this advice! i didnt know these things were an option, like putting my consent in writing is an amazing idea!!!! im sorry to hear about your medical trauma, youre doing so amazing <3 i had the appointment and he told me he actually is 99% sure he found endometriosis and chocolate cysts on my mri!!! and ive got a surgery date for excision in july! im not crazy and i have been right this whole time that something is very wrong. with your help i went in there and asked every question i wanted and even though he was lovely and i didnt have to stand up to him, i was still very brave thanks to you guys who replied <3 I communicated all of my worries with my ptsd and he listened and answers all of my questions and reassured me lots. While i will need a catheter and internal instruments during the surgery, i am trying really hard to just focus on the fact that my pain might go away for a very long time. he is an endo specialist and made me feel very confident in him and his care of me, he reassured me that all internal things will only happen while i am completely asleep and that unless there is an extremely rare complication, the catheter will also be removed while im still under. im really trying to just move past that and not think about it. In my pre op i will bring a massive amount of questions to ensure my boundaries are not crossed and the same when i see my surgeons before the surgery. i am scared but i can do this. thank you so much for your reply and the wonderful advice i really really appreciate it more than you know <3
I’m so pleased for you that your appointment with the consultant went well! ❤️ It’s good news the MRI has shown what you’re dealing with too - it is strange how affirming the diagnosis can be after you’ve been struggling with symptoms for so long. It sounds like you have a really good plan in place - you did an amazing job being so brave and I’m sure you’ll continue to do so through the next part of your treatment.
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