Hi ladies, so after months of waiting with still not even a letter for an apt on the nhs from my gp referral my dad has been kind enough to support me going private and I have an apt with the gynae through BUPA tomorrow.
I’ve got some bits and bobs from the endo uk website but I was wondering if anyone had anything they can recommend I should point out or ask the dr. I’ve been told he will be the same person who will do my surgery if I need it.
Breif overview of my history if it help…
Aged 14 used to pass out every month from pain and would be extremely heavy and irreagular, was sent for an ultrasound aged 15 and nothing came back so I was just given mefanamic acid and put on the combined pill. Whilst I did stop fainting I have never stopped having extreme pain every month. Last year I started getting aching dull pain in the top of my left thigh and sharp pelvic pains and was constantly exhausted, with the pain durin periods getting increasingly worse again. I also had some blod when having a bowel movement which when there is blood or not are excrutiating. I get shooting sharp pains and almost jump off the loo! So I returned to the doctors who completed endless blood tests and said nothing added up and sent me away. I went back when the fainting returned around September last year and was sent for an ultrasound at which the nruse told me my left ovary ‘wieghed down’ and close to something I cant remember sorry. No cysts or anything showed up and it was only when family history was looked into by the gp that the idea of endo came up. In the months between up to now I have daily pain, its not even particularly worse durin periods as can be worse at any time of the month. I get pain in my hips and lower back and my hips and pelvis often feel sore like as if ive been beaten up inside. I struggle to get comfortable in bed. Extremely bloated quite a lot, my left ovary can at time feel like someone is twisting it like wringing out a cloth!
I was recently put on depression pills for becoming so run down and sad and just could not motivate myself to do anything from just the constant pain and tiredness and implications of everything.
I would really apreciate any advice or past experiences if anyone could share them with me.
Hope you are all well xx
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Hope1234
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Hi Hope1234, sounds like youve have quite a journey! i think the main thing is to make sure you explain all your symptoms ( maybe print this or write it all down) it can be easy to forget things while your in there. i have an appt this afternoon, and the advise given to me was to think about what i want from the appointment. so is pain your main concern? or getting a diagnosis? can the gynae give you an idea of whats going on? what will they do next? how long will it take? if they suggest a diagnostic op etc, is there anything they can do to relieve pain in the mean time?
i think everyone has very different experiences, i was very lucky with my gynae who said straight off he would do diagnostic lap and see what was going on, and the treatment was soon after that. but i know others have to push for treatment and diagnosis. make sure you tell them what medications/pills you have taken before, and if they suggest something similar then ask them why they think that will work when others havent?
just try and ask any questions that pop into your mind, dont be afraid to ask for explanations, many leave feeling confused or unsure. so just clarify things before you leave!
and good luck! i hope it is a helpful appointment and you get some kind of answers or plan of action! xx
Thankyou for replying! yeah, i'm just really worried I will forget things and not get the best out of this becuase its been so long thinking and wanting it that now its here I don't know what to do! I will take this along with me as i wrote alot down here and I have a pain and symptoms diary from endo uk. I want the pain to be managed but i also want to understand the fertility implications if there are any. I guess i'm just so worried that i'll be told I cant have a lap or something and that its not endo, i'm 2nd guessing myself becuase its been so long and if i have a better than normal day or people make me feel like i'm over reacting..
Good luck with you apt too, is it your first one aswell? xx
Hey Hun, I hope your ok? When u see the con Tomoz if he asks todo any examinations there let him as it will help with diagnosis from what uve said u sound like u defo have endo as u have all the symptoms like me. I would suggest u tell him everything even with the toliet problems too as I have endo on my rectum.
thankyou! I know everyone has told me they think it is but people who don't know about it are sceptical and can be quite mean, especially as i dont have a diagnosis and it does make me question myself.. but ive been pushing for this for ages so i won't let it stop me! So i should mention everything and even if he doesnt think its endo ask what he thinks it could be xx
Ye Hun, if u get pain during sex too I know it's embrassing to go into all that but it will really help with diagnosis. Write a list tonight of questions and a history of when you get pain and normally they overload with questions and you forget esp with nerves too.
I can relate to that, theres so much information to give them with different symptoms, and questions you want answered i definately think writing it down is the best way forward, symptom diary is really good too, as they can look for patterns etc! I think you need to say to them that you want a diagnosis because you want children and are worried that issues in the lady area could effect it, and also explain how the pain effects you! its a scary old time trying to find out whats going on. equally if they say they dont think its endo... then ask what else it could be, its all related to things gynae should be able to deal with, try not to let them dismiss it. its a big problem thats been ongoing and you deserve the help and they atleast need to investigate it properly. you are not over reacting, there is a problem and its painful so they need to figure it out! lots of people have such a journey to diagnosis but get there in the end, so just hang in there
no its not my first appointment, but i had a lap last year to treat endo, and got the rarest post op complications and have had crazy pain since then, so i really need his help today!
let us know how you get on tomorrow, will keep my fingers crossed for you that its a useful appt. and your gynae is understanding! xxxx
thanks hun, oh no hope he helps you today then! yeah i know thats exactly it just not knowing has been aweful and confusing. It will be nice to hear a doctor believe me so thats what i'm hoping for too! xx
thanks he was lovely again, going to have to have another lap, but ct first to check nothing else is causing it! fun fun fun! ended up not using my list,as it wasnt going to change his course of action however, just a word of advise, he told me a good painkiller to use..and i have forgotten already! so make sure you write stuff down in the appt. if it will help you aswell x
haha oh yeah i think i will have to as i have a memory like a sieve! My fiance is taking me so hopefullyhaving an extra pair of ears in the room is going to be good too
Glad your apt was a succsessfull one! More surgery is good and bad at the same time from what i am piecing together on here isnt it?
hope its speedy for you so they can find our whats causing you all that pain!
Thats kind off the main thing on my mind too, I want to know whats causing all of this and if its endo where is it and how bad and what will it mean! But to be honest this forum is great so just knowing I have it and where will help me xx
Thats good then, yeah defo helps to have another pair of ears thanks, yeah i have mixed feelings, its good so they can get in and find out whats happening now and treat what they can, but i'd rather have as little surgery as possible!
I think even if the news for you isnt brilliant, once you know what youre dealing with its easier to get your head round it, not knwing drives you nuts because you start thinking about what it could be! hopefully tomorrow will give you some clarification and an action plan, and then you can take it one step at a time from there! i like the forum because in the real world, however hard people try they just dont get it! whereas here people do understand and i find that very comforting x
Really sad news, the hospital called and said the gynaecologist cancelled all his apts last minute! Called bupa though and they did call me back as soon as she called the hospital too find out what happened and I have a new apt of Friday... Just sucks cause now I have to go on my own because my fiancé could only get tomorrow off to take me :/ xx
oh no! that's really crappy! such a build up to these appointments, although im glad they are still fitting you in this week! you will be ok on your own.. you've got this far so you are a tough cookie, just make sure you write anything down you need/want to remember x
Update, had the consultancy today, I have a pelvic contast MRI Monday and need to see a rectal specialist about concerns the gynae has. He thinks I may have endo on the bowel so wants to take extra care, lap potentially week after next! Xxx
Hi hope, was wondering how you got on and saw you had written an update! It sounds like a lot to take in, but at least they are taking your issues seriously and acting swiftly so you don't have to endlessly wait for answers and treatment! I wish you all the best with your upcoming appointments and I hope everything goes smoothly for you xx
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