If anyone has been following my story you will know I had a negative lap last month under a general gynae.
I am really struggling just now.
I feel like I'm constantly fighting a losing battle. I've had 7 years of every endo symptom in the book and still, doctors don't seem to want to listen and I am still no closer to answers
And now, a job I started last month and had been loving I am now loathing as I feel that now because they know I have a long wait to see a specialist and am on morphine until then, they couldn't be less supportive. I feel like they're looking for any excuse to get rid of me.
I just feel so hopeless.
Has anyone else fight like this is just never going to end?
I'm sick of people telling me things are good because they can't find anything wrong but that is the WORST part of this.
I've been unwell for 7 years without knowing what's wrong.
People don't get how horrible and confusing that is.
I feel like every doctor I see thinks I am mad or a pain med junkie.
My gynae / surgeon has now referred me to the BSGE Endo Centre in Edinburgh but I've been told by the centre that because I live outwith the area they cover, I will be waiting a long time and because my lap found nothing I'm likely to be waiting even longer.
I can't deal with months of waiting and I wish I was in the financial position to go private but I just ament and it's terrible that I feel pushed into this decision because I can't get the treatment I need.
Ugh, I just needed rant and this place is the best place for support.
Today is just an awful day😭
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staceymacg
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It's day one of the 2 week long long bleed for me and I've been in tears most of it.
I too am struggling to get anywhere with a general gyne and to make it worse he's just fobbing me off saying it's my weight that's causing the problems!
Literally nobody ever seems to understand the levels of pain your experiencing day in day out. Then add that to the exhaustion and you start to believe yourself that your just going mad!
I'm still pretty early days on my journey to a diagnosis (18 months in) yet at my first appointment with the gyne he said straight out you sound like a classic example of endo and at that point I'd never heard of it.
Sorry I can't be of much help but I just really wanted to let you know that you are not alone in the way your feeling. I really do hope you get into the BSGE centre soon and get some much needed answers.
I've just started bleeding as well, that would explain why I'd been more crippled more than usual. Just wondering how long this will last, last time it was 3 months.
I really hope you get some answers soon, please push as much as you can.
I really hope they accept my case, I'm just really struggling with the thought that I might now be accepted and then I don't know where I would go next.
Surely they should accept you if that's the closest/only one in your area?
Have you thought about going back to your gp and asking to be referred to a different gyne who specialises in endometriosis (a quick search online should be able to help find the right one)
These last few months I haven't got any fight in me, I've all on looking after my kids. I had to close down my business and focus on day by day. I do know I need to pull my socks up and start demanding more but I'm sure you understand what I mean when I say I just haven't got it in me.
It's in Edinburgh and I'm in Glasgow, it is my closest but because I'm outwith the Lothian area the woman on the phone said I will definitely have a long wait. Not exactly what I wanted to hear and she was less than sympathetic!!
I haven't but I think I need to, I think I'll go on Monday afternoon. I've found 2 surgeons in Glasgow but I'm not sure how old the website is. Im sue my GP would be able to have a look to see if there are any in Glasgow?
I know what you mean. You feel so deflated after countless people telling you that you're fine. It's exhausting!
So sorry to hear this ladies. It is such a painful and exhausting journey towards getting a diagnosis and then appropriate treatment. I've been under a general gynae since my diagnosis in 2012. I have now got a referral to a BGSE clinic in the same county as me though I also have a wait to see them. I'm afraid I haven't got anything useful to offer except my virtual hugs and understanding. Thinking of you. x
This has been huge comfort. Have you actually been diagnosed! I'm worried I'm going to have a much longer wait to see BSGE because my lap found nothing according to the general gynae although he only checked my womb & ovaries!! X
Hey there hang in there I will reply more fully later. Just woke up from a bad dream but need to sleep. Sounds exactly like me. Can you afford to just get a private consultant maybe £200 £300 even? So they can refer you to a specialist.. However I suppose that's where your at now with the long wait. I'm thinking maybe a private specialist can maybe give you zolodex as an emergency interim measure that may tide you over until you get to see the nhs hospital. Ive had complete hell over this for 10 years or so and yes the work thing as well . Makes you feel crazy no one believes how bad it is . Morphine didn't help me much either nothing much does . You could maybe try progesterone only pill bit but it may make the pain worse never helped me anyway but some people it does . Can you go back to gp z f push again to get a referral in 6 weeks of less I know they don't listen I know how they treat us like junkies. Maybe other pain Meds oxycodone?? Tramadol but your already on morphine. If taking any contraceptive pill maybe try stop it it may help also . I know the two things Ive said contradicts but hormones make mine hurt more. Best bet I think is private specialist see if they can give u zolodex. Hugs hang in their you really really have to make a big noise to get anywhere with this and it shouldn't be so. Pm me for doctors I know of who are specialists that Ive Seen if you like. Sending u massive hugs this thing stinks and no one does anything anywhere near quick enough xxxx
Thankyou so much. Is that around the rough price of seeing a specialist? I'm sure we could get that together. I'm getting desperate now. I've started bleeding yesterday and I am just floored. This is my first bleed since my lap and I am in absolute agony. How do I go about seeing a specialist privately? Xxx
Hiya love i will send you my email address by pm and we can have a chat about where ive been and what ive found useful / might help you. My story just the same as yours but it started at age 30 i cant even imagine how bad it must be at 20. My periods wernt that bad it was the before times and between times then all the times. Sorry had to get some more sleep has had horrendous nightmare last night !!
What hormonal treatment have you tried? .. Endo has 3 treatments, surgery is only one. Buscupan can help with pain too! At end of the day, thats all the BSGE will treat you with, seeing as your first lap showed nothing to operate on! Try the combined pill back to back, the mini pil or marina coil!
Surgery isnt 'gold standard' and nor does it cure! So dont hold out thinking that awaiting an op will somehow cure you. It doesnt, even when you have something needing surgery.
Try manage your disease while waiting! Even if you had surgery, if you do have endo its a chronic disease that needs lifelong management anyway!
Tried the pills a few years ago and I don't want to go near the coil, doctors tried it before and I was in agony trying to have it fitted so not going near that again.
I'm on implanon but don't want to do anything like changing contraceptives to mess with my hormones until I see the specialist. I just want another lap x
Holding out for a lap could ruin your life though? I was 'priority' and it took 12 months. During that 12 months i tried everything, and yes it failed, but didnt speed up my lap. You will be the bottom of a very long pile! And even if you get a lap, and endo is found and removed, thats not the end of it! You will be expected to learn to manage it, up until menopause and possibly beyond.
I dont mean to be rude when i ask this:- If you got a headache, would you wait til you knew the cause before taking paracetamol?
I know youre dying for a diagnosis, but suffering aint going to make that happen faster! The hormone treatments wont cure your endo if you do have it, it will just help you get from now to a possible future lap. If you have endo, endo will still be found. Didnt you say you are having trouble with work? Believe me, i had Dr and specialist backing and under priority for major surgery and i was still found fit for work! Since which, i really struggled to find another job as being "off sick", no one wanted to employ me.
Im really not trying to be mean, just trying to be a voice of reason!
Hi im sorry but i find your responses a little harsh towards a young woman who is obviously really struggling its very negative and buscopan is for IBS did nothing for me . I think she is just trying to get seen by a specialist and gets something done. Frankly your posts sound like you want her to throw herself off a bridge !!! There are things that can be done to manage the illness and one bsge centre can be radically different better or worse than another. How many times have we seen on here people having laps with inexperienced gyneas and then it is found the 2nd time when an experienced gyne looks. Ive been through this twice now i know it happens and there really are very very few really good gynes experienced in this disease out there. Sorry but i have to say it .
Buscopan is a miscle relaxant and works on all abdominal organs, 1st off! Being mean? How am i being mean? Her suspected Endo is effecting her life, and most importantly her employment. Treating it, ie, trying to stop it getting worse is not going to effect seeing a specialist, but may help her retain employment, seeing as the DWP are unlikely to help. Seeing as ive been there and done it! Her suffering is not going to get her seen faster! Im suggesting she tries KNOWN TREATMENTS for endo why she waits for the NHS! Get a grip!
I found your responses harsh to be honest. I told you I've tried what you suggested with no change.
I am following medical advice to not radically change my hormone levels by changing contraceptives until I've seen a specialist.
My suffering won't get me seen faster? Then what kind of health system are we in? I've been suffering for 7 years and I'm pushing damn hard to see who I deserve to see.
I have tried buscopan and as suspected, it did nothing as it's for IBS.
I'd appreciate you changing your tone when talking to me.
It's all well and good if hormone treatment worked for you but you have no right to tell me what to do in the meantime and to talk to me like I'm not doing anything to help myself.
I am pushing for a second lap because I know my body and I know they missed something.
And, surgery is the only way to remove endo. Excision surgery is the only way to remove it.
I am so sorry to hear that you are really struggling. I know that feeling and it's a horrible place to be in, so first off here's a massive hug.
My lap was clear too so I totally understand how it feels not to get any answers. My gynae's response was to operate and remove my ovaries putting me into early menopause. If this is offered to you please think long and hard as it is life changing and for me, solved nothing.
However, this isn't about me, it's about you and the desperation you must be feeling. The crushing disappointment when you don't get an answer and can only see a future of more tests and continuing pain. But honey, you can do this and you will! Yeah it's shit and it isn't fair, but you will keep going because you have no choice. And please know that for every person that doesn't get it, there will be someone who does, someone who will have your back.
I saw a chronic pain clinic at my local hospital and the doctor suggested I try Duloxetine instead of morphine. Did you know at higher levels the morphine can cause pain rather than lessen it? Okay yes, my operation revealed other things (adenomyosis) and set of Fibromyalgia, but these different tablets help a little better than the morphine (weaning off slowly).
Life is still a struggle but you can do this. You are amazing. You've gone through all this and you still keep going when so many would have given up. Answers will be found and help will come because you know what? You deserve more than this and good things will come.
I will leave you with another hug and I will be here, thinking of you.
Your GP should be able to refer you to your local pain clinic. One thing that made my GP listen was to write down everything that had happened, how desperate I was feeling and how I needed help. If you get attitude you could try speaking to the practice manager. You deserve help and respect.
Let me know if you ever want to chat and I will send you my email address.
Don't give up flower, you are stronger than this and deserve so much more from life.
Xxx
I'm always available if you want to vent/chat about daily struggles! x
omg me too! i feel the same kind of, just had my first lap on tuesday after 8 years of every single endo symptom like you say! have been tested and ruled out many other things, have been palmed off a million times with various medication/pills/etc and finally i was due for a lap and thought yes this will be it i'll finally get a diagnosis!! nope, negative lap which everyone seems really happy about, which yes i guess it is good really that i don't have it, but now i can't understand what do i have then?! they said i have retroverted uterus but the more research i do on that and have spoken with a couple of medial friends, it is so common and barely causes anyone many problems! so i'm back to square one i feel, and when people ask what's wrong or i'm trying to explain why i feel unable to work properly, i can't actually give them a reason why!! god it is frustrating, i have had the mirena fitted now so am really hoping it works for me. have you any idea what the options are for you now diagnosis wise? have they mentioned or have you found anything else you think it could be? it has now been mentioned to me that should it not be endo i might just have to put it down to the fact i am a woman and women can be prone to problems?!! sending love sweet, you can always rant to me if you wish as i am totally in the same boat! xx
I'm so sick of people telling me it's good they found nothing, it's not good to me. It crushing to hear that.
My gynae referred me to a BSGE Endo Centre but I will have a long wait to see a specialist there so I'm going back to my GP tomorrow afternoon to see if there is any endo specialists in Glasgow he can get me to see much sooner.
I wouldn't accept that women just have problems, that's a load of crap!! Don't accept that!!
I know my body and I'm so sure it's endo!! Another thing is adenomyosis, that's kind of like endo so that's another possibility.
i know everyone was smiling and happy for me but i was actually quite upset! i mean it's crap either way really i don't want to have it but i just want to know what's wrong with me!!
feel like i've exaggerated the whole thing now and it's all in my head but have to keep telling myself it's not, i've got a feeling my next gynae appointment they'll try and discharge me! is it them i have to ask to be referred to bsge? is that the next stage for me after a negative lap? i don't really know what to do next! x
I was the same, I burst out crying the second my surgeon spoke to me.
Yes, tell your gynae you want to be referred to a BSGE Endo Centre, do a bit of research and see where your nearest one is! You have the right to a second opinion.
I'd also ask your GP if they know of any endo specialists you could see in the meantime as I think BSGE centres have quite long waiting lists x
Hiya, really sorry to hear your story😞. I'm in exactly the same situation as you, I had a diagnostic lap on 26th may which found nothing despite me having every Endo symptom from being 17 and I'm 25 now. It's horrendous, and even harder to live and deal with because we get pushed away by doctors who tell us to "just get on with it" because they can't find anything wrong so I know exactly how you feel. I've got my follow up Gynae appt on Wednesday to see what happens next (which will probs be nothing) because they seem to think I should stop hurting because there's nothing there. I know my own body and I know somethings not right with it, as so will you. I really hope something comes good to you eventually and you get the answers and treatment you need and deserve. If you ever need someone to talk or rant to, you can always message me anytime you want. Take care xxxxx
Bloody hell!! Your jokin?! Why not?! That is bang out of order. Everyone needs following up after surgery. You should make a complaint to your local PALS. You need following up! Please don't give up, if the pain is so bad you need to be taken seriously and don't stop fighting till you do get taken seriously. I feel like giving up most days because I feel like people think I'm making it up, but at the end of the day who cares what they think it's us that's suffering. Keep fighting!! And your welcome anytime. Let me know how you get on xxxxxxx
No! I woke up after surgery and asked when my follow up would be and they said I don't have one and that I just need to go back to my GP!! I went back to my GP and he referred my to a BSGE centre and then they called and said a GP referral won't be accepted because I live outwith the area so I need a gynae referral so I had to call my gynaecologist and get him to refer me which he did but then I was told I will have a long wait anyway because I'm outwith the area aaaaand because I had a negative lap so I'm hoping when I go back to my GP tomorrow and beg to see any other endo specialist here sooner he will be able to sort that for me... xxxxx
You got a lot of wonderful replies so I just can tell you that I totally feel with you.
I was downplayed by doctors for years. It resulted finally in deep infiltrating endometriosis (awaiting treatment in BSGE center) and all kind of other health problems. I am now a wheelchair user with orthopedic shoes for longer walks than 10 minutes. I could not have children (I am 42 now). I have multiple AI diseases. However when I am not bedbound I still work 36 hours a week with medicines and painkillers.
So I am a warrior and so are you and every woman!!
Keep strong, you know what you feel and what is wrong with you!!
Sorry to hear you're going through such a rubbish & frustrating experience.
Following on from an earlier reply, sometimes you can pay to see a consultant privately who will then add you to their NHS list for surgery which shaves off quite a bit of time. You do need to make sure that they work for the NHS as some consultants now only do Private work.
I would also recommend you take someone with you to your GP appointment, preferably a male! It frustrated the crap out of me but DR's would take what my husband was saying about my health issues far more seriously than when I would explain it. In hindsight this may be because hubby was adamant that my pain levels were 9/10 whereas I probably put them at 7/8 as I would feel that 10 was heart attack level!!
Whilst you're waiting for surgery it might be worth you looking at the following:
Changing painkillers; The only painkiller that ever helped me were Diclofenac suppositories. I literally couldn't get out of bed without them! Some people on these forums also rave about them but different things work for different people.
Look into the Endo diet; I also found that diet massively impacted my pain levels & that gluten & dairy made my periods really painful. Even after excision surgery with a top specialist I have bowel issues if I eat either of those things despite my periods bearing much less painful.
Some people also find acupuncture &/or reflexology helps.
Hope some of this helps you! Keep fighting for the best health care for yourself. Xx
It tends to take a good 3 months to feel the benefit of the diet so keep going! The main things that have helped me is not eating chickpeas or edamame beans (I used to eat these everyday not knowing they were full of estrogen!) & switching to organic chicken & eggs. It really is a work in progress though - & so bloody boring- so just keep going & occasionally re-evaluate what's in your diet & what could be removed. Xx
Not sure about a book but I just done some research online and I've basically just cut out gluten & lactose. I allow the odd treat but majority of my diet is dairy & gluten free!
Oh no. I'm sorry to hear that. I bet it just feels like one thing after another at the moment! Please get yourself checked out, if nothing else to prevent any infection. I'm sure that you have done all this already, but have you done the pain diary thing? I took pages and pages to my specialist (and all specialists/doctors) until some one listened. Let me know how you get on with the bleeding and if you need anything. Thinking of you. Xxx
Yeah I've started the pain diary thing so I've done it this month and will do it until my app with the specialist that I'm now going to pay to see privately! Xx
Good for you. If you can leave photocopies that will really hammer it home. Think it's rubbish you have to pay, but agree might be worth it (and then get referred back to NHS for treatment). Hope you get a call back soon. Xxx
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Struggling to get help
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RE: need a friend. Surgery done and wasn't a success
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Struggling so much and don't know where to turn
