I don't really know why I'm posting as there is nothing that can be done but I'm furious and upset and just want to get it out. I know you will all understand.
I posted a few days ago about getting the results from my MRI through the post. But it was just a load of medical jargon. Through Googling some terms and speaking to all you lovely lot, it seems to confirm that I have endometriosis, but doesn't say it in black and white. For the last few years, all I've wanted is a bloody diagnosis. To know for sure that there is something wrong and it's not all in my head.
I called the hospital yesterday and left a message asking for a five minute call from my doctor to just confirm whether or not this means I have endometriosis. The secretary called back today and said that a doctor can only speak to me in clinic. She offered to bring forward my next appointment which was meant to be in three months time, but she could only bring it as far a 17th October. That's a month and a half I now have to wait to really hear what's wrong with me. I've been unbelievably anxious about this since I got the report on Friday. I feel sick. I'm so sad about the potential life changing thing that's now happening to me. And now I have to wait a month and a half to hear whether this MRI result is enough for a diagnosis. I know how overworked everyone working for the NHS is. But why can't I have a five minute phone call? Or couldn't my doc have written one or two lines under the report to say what it means in plain English? Am I being unreasonable? I don't even need to discuss treatment options right now. I just want to know whether I have endo or not. I don't think it's fair to be left in the dark for so long. It even says on the letter to call them if I have any concerns. But then they don't take my call.
Anyway. Sorry for the rant. No one else understands how frustrating this is.
Hope you are all okay today ❤️
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CitizenErased
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I'm going to try. They don't have any bookable appointments any sooner than the gynae appointment, so I'm going to try for an on-the-day appointment tomorrow. I doubt they'll consider that important enough for the same day, but I'll try.
It's so frustrating but hang in there. Really hope you get the on the day appointment. Maybe give the doctors surgery this same rant above. I would try anything to help when in this situation as I'm terrible at waiting too.
Just make a PALS complaint and reiterate how this is affecting your mental health, be specific/detailed.
They absolutely can give you results over the phone, my consultant did before referring me to a BSGE centre. I’m not sure what this nonsense is re. needing to see you in clinic. Unless you complain you’ll wait.
We all need a good rant now and again. Most of us have had to wait, although I’m not very patient and do chase things up, I’ve also paid to see consultants rather than wait.
I’m assuming in this instance the consultant hasn’t had a chance to look at the paperwork and make any decisions, it might be they need to do a team meeting. If you can afford it and the consultant does private consultations you could go that route. These days that can take weeks sometimes. 🤞 you can get one tomorrow via NHS
My private consultation cost £150. I thought it would be more expensive (I’d also put it off). She requested all the test results before we met from the hospital and spent 1/2 talking me through my results. At the end of the session, she wrote a referral to what she considered to be the best local endo centre- her referral was literally life changing.
I know it is a lots of money to find, but if at all possible it may be a way forward.
Ps my GP will not discuss or do anything to do with endo as I am seeing a specialist (arrrh)!!
Ordinarily I might be able to afford that but I'm super short on money this month as it's my partner's 40th birthday. I'm tapped out, haha. I'll keep that in mind for future though!
I know what you mean, things just get too expensive these days. Dr Morton provides a cheaper service, she’s a gynaecologist and answers questions either over email or phone.
You're so sweet to ask. Yeah, I think I'm a bit better today. It's still on my mind almost constantly, but since everyone here is absolutely convinced the MRI report means I have endo, I guess I have my answer. So I'm focusing on writing down some questions I want to ask my consultant when I get to see her. I need to make the most of that appointment while I'm there as I don't know when I'll see her again.
Glad you are feeling a bit better. Don’t be hard on yourself during this process. I know it’s not necessarily the answer you want, and it’s perfectly natural to want confirmation and overthink it all the time unfortunately 🤦♀️🙄
It’s a good idea to jot stuff down. I normally do but went to appointment Tuesday and forgot something. Don’t let Gynae rush you through the appointment either. Are you keeping a diary of symptoms?
Definitely! I wrote down everything last time as well. I had two pages of notes for her, haha. I've been keeping of everything in the Clue app since January 2022, so that's really handy to show them. That's what helped them take me seriously eventually.
😂 keeps them on their toes. Crazy what we have to prove. I went private originally to prove I had something real to GP 🤦♀️🤣 determined to prove a point!
Don’t forget to let us know how the appointment goes. The forum is really good to vent if you’re having a down day 🙂
sorry you are going through this. My daughter was diagnosed with endo after 8 years, her MRI showed nothing she even had laproscopic surgery and it wasn’t found until she got an gynaecologist who specialized in endo and did laparoscopic surgery I hope you get to talk to your Doctor . If the MRI doesn’t show anything insist on getting a laparoscopic done
I originally wanted the MRI because I didn't really want the laparoscopy (though I might have to now). I honestly didn't think the MRI would show anything, but it does show something. I just hate that they've sent me the report and expect me to figure out what it means myself. They shouldn't have sent it at all if they weren't going to explain it.
Thank you for being kind. I hope your daughter is getting the help she needs now!
You’re right they shouldn’t have sent the report and not explained it. If you can’t get into your Doctor for so long can you take the report to a clinic Doctor ? I don’t know if you have clinics like where I live
I feel your pain, I’m so sorry that this is happening to you!! I have a friend who had a laparoscopy to remove a cyst, and while they were ‘in there’ they found Endo. But no one told her, she found out two years later when she went back to see them for pelvic pain and they said ‘it’s probably your endometriosis’. It was on her medical record, but not given to her in a letter or explained face to face. It’s exhausting that we have to keep advocating for ourselves - giving someone a clear diagnosis should be a priority!
Unfortunately the only way I managed to get a better experience was to pay privately. I had a private lap, private MRI and three private consultations. Cost a chunk of my savings for a house deposit, but sadly I feel it was worth it (for me) in the end. I don’t know if it’s an affordable option for you, but would a private gynae translate your results letter if you paid for just one consultation? It might be worth finding a local one and emailing their receptionist to ask, they can be quite helpful. I hope you get some answers soon. Sorry for your experience so far. Xxx
I feel for you it's infuriating. In my experience, GPs really don't know that much about endo. If you could afford it, it may be worth paying for a private appointment with an endo specialist. You can take your notes, talk about the results and treatment paths and maybe see someone a bit sooner. Also, have you had a laporoscopy? If not, that's what you need. That will definitively show whether you have it and how much. Plus they will be able to remove some of it while you're under. Hope that helps x
I haven't had a laparoscopy yet. I was trying to avoid it, but I think I will have to have one now. At least, that's what I'm guessing based on what little I can glean from the MRI report.
I can't afford private sadly. Thank you for being kind x
You're very welcome. I've been there. Sorry I should have mentioned, I was the same with the private appointment but I paid for the first one and the lovely consultant transferred me to the NHS from that point forward. If you can find the money for the first appointment I would highly recommend that route. You will feel much better with an endo specialist taking charge of your care. If you need any other info, please feel free to message me. X
You can put in a Subject Access Request with your hospital and request your MRI report. This will have the technician’s opinion on what is seen. I always request mine because letters I receive miss things out. It is likely if Endo is seen, the report should state it.
I've got the report. My gynae sent a copy of it to me saying she had reviewed it and said I should call if I have any concerns. But the secretary won't let me talk to her. It has a conclusion at the bottom that seems to suggest endo but doesn't say it in black and white. I just wanted a clear answer of yes, it's endo, or no, it's not, it's something else.
I completely understand how you feel, the system is broken! You’re not being unreasonable, I received a letter in the post for a phone call with the consultant, it was only when I spoke to the endo nurse that I understood why I have received that appointment in the post. It is rubbish how things work and they don’t realise how anxious it makes us feel waiting forever ! Always here if you want to talk but I think the consultant might want to do surgery to defo confirm you have endo? That’s usually the route that they go down xx
I think they probably will want to do the laparoscopy now. I was trying to avoid that. Honestly, I didn't think the MRI was going to show anything at all, as I thought if I had endo, I would only have an early stage. But I think the conclusions of the report are suggesting deep endo. I just wish they had written that in black and white so I didn't have to guess! You're right, it seems they don't realise how anxious it makes people x
Raise a complaint with PALs. The shameful fact is that the health system in the UK is completely destroyed and without soul. The money we pay through taxation and how it has been misspent has led to this. I am sorry you are going through this. This is the experience of most ordinary citizens here. The only way of getting some quicker help is to complain or to pay privately. As I said in the outset, it is a shameful fact….
you could take it to your Gp for some clarity. I went through the same. In my case i didn’t even have a gynaecologist. I had the Mri done privately. I had to then see a private gynaecologist to explain everything to me. My Gp then did a urgent referral.
It’s good you have a copy of the report so you can begin to try to understand what’s going on. Waiting times are extremely long at the moment for everything. Try not to worry your appointment will come round quicker than you think. Getting any appointments with a gp or hospital is practically a no go these days. My husband has just spent most of August in and out of a&e and being admitted. He had been refused a gp appointment 3 times and ended up in hospital with sepsis a temperature of 40 and fitting. The gp called the other day and said you can’t say you haven’t been seen you’ve had 4 appointments this year most people have one! The fact he has cancer and other issues wasn’t relevant! The nhs is a mess. Take your report to your appointment, like you have already google anything your unsure of, ask pointedly what does this mean, even if you’ve googled it and are happy, the more clued up you are the more some of them don’t like it but have no choice to go through everything, I found that out. Best of luck you will get there.
Morning. Agree with all the comments but I’m going to put a different spin on it.
I read your post 'Conclusion: Thickening of the sacrouterine ligaments. Fibrotic/endometriotic plaque within the pouch of douglas adherent to the colon and posterior uterine serosa.'
If this were me, I would pretty much assume that meant I had an endo diagnosis. That way you can start forming a plan. Otherwise you’re going to drive yourself mad. Very much sounds to me like your symptoms indicate endo and with a quick Google (I AM NOT A MEDICAL PROFESSIONAL) that the last paragraph “indicates” endo. It looked similar to one of my letters from a LONG time ago.
Try to stop ruminating on the might be might not be, just assume you have it and put all your energy into your next steps.
Make sure your body is being looked after the best way it can, follow an anti-inflammatory diet, cut out sugar, alcohol, all processed foods, eat the rainbow, cook from scratch, go to bed early, try and take a walk somewhere really peaceful, run a lovely bubble bath, phone a lovely friend.
Stress is no 1 friend to endo and causes triggers and flares. Be kind to yourself. If you do finally get a diagnosis (took me 8 years and I’m now 52, had it all my life) you’re going to have to adjust your mindset big style.
Yes, get angry at the medical professionals, but choose your battles, conserve your energy and know you are not alone. Hope I’m not too “preachy” but that was my alternative take when I read your post.
I’m sorry you are having to go through this. I would definitely try and speak to your GP if not the six weeks will fly by and like others say it is probably best to assume you do and start making plans for questions you have and implementing an anti inflammatory diet.
All I would say is that from my experience they won’t say for definite if you have endometriosis without a laparoscopy. When I had mine done it was always suspected with thickening etc and a cyst. It was not until I had my lap 3 weeks ago that they confirmed the diagnosis and removed it. So all I would say is just be prepared that they might say in order to confirm for definite we need to do a laparoscopy but we are pretty certain it is - this is what my consultant was like
Hang in there, you have got this - sending virtual hugs
so sorry to hear about this! I had my MRI on January this year and this morning I am seeing my consultant for the follow up and to discuss the results! 9 months I have waited as was the same as you kept getting told that there are no clinics available, consultant is on sick leave, medical secretary is not allowed to give any information as not medically trained etc! I feel very overwhelmed and anxious about my appointment this morning as I do t want to miss any information out and then e worried I won’t have a follow up again for awhile! Hang in there and keep going back to your GP, maybe contact PALS and keep ringing the medical secretary and ask them about any cancellations and that you would be willing to take them obviously if you are able to! And this is the place to rant, this community is so supportive and I think it is because unfortunately we are all facing the same barriers and issues ❤️ x x
I hear you want confirmation from the front line and it’s difficult to get that. Accepting can be bloody difficult even when we know that the reading is 99.9% showing we have a problem our internal dialogue still wants that .01% to reach belief. We all need certainty to feel safe and suddenly this really doesn’t feel okay in any shape or form. I flip between outrage and fizzled heap when I get pushed here by the medics. Frustrated at not being “able to move forward” .
There’s a kind of numbness that we are left flaying about in a vacuum with apparently no action . That there is indifference to us and our situation, that we don’t somehow matter or exist. I’ve learned over too many of these occasions to not hand them the power over my life in quite the same way because otherwise I’d be a constant basket case. For me I’ve chosen to pause and go what’s the outcome either way for me and move on that knowing some how I’ve not completely surrendered to the chaos of the broken system. It’s for sure a good moment when am told but then again I’ve been told so many inaccurate, wrong diagnoses or non diagnoses that I take it with a pinch of salt tbh.
I get where you are and only stand horrified as a friend told me of her father in law with urinary blockages who was catheterised back in Feb, with numerous blockages of the tubes and consequent infections, who was handed a leaflet as they left in Feb by a staff member. No consultation then or since , “ consultant had forgotten him “ despite myriad phone calls they still have no definitive answer as to really what’s happening. The leaflet was on cancer.
It’s that knowing where and when to push for answers and then working out when they are avoiding the fact that they either can’t treat or have a friggin long list. The effect on patients is diabolical.
I understand how you feel . But please don’t try to be upset because even if you have endometriosis, it’s nothing to worry about I has it for the last 20 years but never been diagnosed until recently I had MRI scan and they vaguely said it’s endometriosis but when they do laparoscopy only then they can confirm what the sticking stuff is in my lower abdominal and near my ovaries, I couldn’t conceive for the last 10 years and that was the reason but luckily I have children so I am not too fussed about having children
hun I had an mri last September and I waited for around two or three weeks as I thought it would take that long I then kept ringing gynea for advice as I said I was suffering extreme anxiety with the wait . In the end I asked to subject my records but like you there was a lot of. Jargon and medical terms I really didn’t understand and to get those results it took till end of march this year to even get those result . I said please can you tell me the results the secretary said I’m
Not allowed to say what the results mean . I just found it really hard . I totally understand what you mean it’s so unfair. I was told after my op in early may you will get a follow up in three months it’s nearly been four months already . Honestly the waits for appointments etc as so ridiculously long and the waits from
That till operations is also so so long and all the seem to say is it’s a back log from covid when they weren’t able to do operations . How has it taken four like years for them to say they are still catching up . We wait long enough for an appointment to
Be told yes it’s severe endo and then they knowingly leave is so long in severe pain when symptoms get even more severe we can just about get through the day unless you keep on at gp to say you can’t cope but there is. Not. A lot they can do. As soon as I was diagnosed I asked my gp to refer me to the pain clinic as pain clinic dr can prescribe drugs but they also look at you as a whole person. I was referred last April and got my first appointment last November they had a long wait too. I struggled so much before my op that I had this year and now my pain is just as bad as before. . Am just so sorry that when we want a simple yes or no or what does it all mean it takes so long for that even to be answered. I have autism and anxiety it affects mental health so so much when you feel in limbo . Take care hun I know it’s hard but try and hang in there .
NEVER apologise for having a rant, we all need to vent and sometimes it's easier to write,although I do go outside and scream at the bottom of the garden !This community is full of wonderful wonderwomen, and you are now one of them 🤗
Take some time out for yourself without thinking about all of this. Maybe a little walk, or sitting somewhere quiet, listen to your surroundings, focus on something else for a bit.
Sending massive hugs and, dont worry..you're a warrior 💜
It had a load more than this, but this was the conclusion at the end of the letter:
'Conclusion: Thickening of the sacrouterine ligaments. Fibrotic/endometriotic plaque within the pouch of douglas adherent to the colon and posterior uterine serosa.'
But everyone on here has said that this is almost definitely endo, so I guess I just have to accept it and think about what I want to do.
Dear CitizenErased,Well unfortunately many including myself have had letters like this. It is a shock. Now it's time to find your inner self to deal with it. I was stage 4 when they found in my 20's. I had a life saving Operation at 26yrs. My lungs bled every month before I return to taking Zoladex.
Exceptance, my verses it. A form of anger, girl power to stay on top of it.
Finding the right treatment. Giving yourself space, extra thought to your general health. Explaining to friends, family the impact.
It's tough, Sometimes looking well but feeling ill. I often say I would get sympathy if I limped! It's a hidden illness.
Just to reassure you I was lucky enough to be able to go private (the waiting list in my area just for a consult on the NHS was 12-18 months), and my follow up appointment after my MRI was about 6 weeks. My MRI summary was that it showed I had adenomyosis and ‘features consistent with deep infiltrative endometriosis’.. like on your report I had thickening of the uterosacral ligaments - this is the must common site of endo. I did end up having a lap and I did have endo where they thought, both lesions and adhesions.
So I would assume for now you do have endo and start to think about what you would like to do moving forward so you are prepared when you have your consult.
It makes perfect sense to me what you’re saying. I’m 54 and was diagnosed with endometriosis nearly 10 years ago. But I’ve had loads of scans laparoscopy endoscopy. and too many doctors poke and prodded. Some private some Nhs. Every single one of them can’t tell me where the endo is. Also I have adenomyosis. They now go by symptoms alone as there’s not a real way to see it until they go in to remove it. They claim to be ‘specialists’ for an incurable illness. One doctor told me that I’ve probably had it for about 30 years. You’re right to question them. Take a friend or family member with you for support. Good luck xx
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