Fed up :(

[CourtneyD]

Hi everyone,

I am 18 and have been suffering with really bad pains and pulling for over a year now. My local doctors have tried me with lots of different medication as they weren't sure what the issue was. As I was in so much pain my parents decided to go private to get the issue sorted. The specialist said he is 95% certain that it is endometriosis and that I need a laparoscopy and whilst he is there he will remove the tissue. This would have been £8,000 privately so I am on the waiting list with the NHS this was in March I was put on there and they said due to my age it should be about a 6 month wait. I have an appointment with the specialist on the 4th July so hopefully that will be about the op and will get the ball rolling. I was just wondering is there any medication or anything I can do for the pain as I am currently sitting my A Level exams and I'm finding the pain and tiredness is really affecting me and making me more stressed out and in more pain. I am also not sleeping in the evenings due to the pain and I can't get comfortable as I can feel the tissue connecting to parts of my body.

Hope you're all well!

Many thanks,

Courtney x

[Harpyiai]

OMG I was in the same situation, it is EXTREMELY frustrating. My A-Level Results were affected because of my Endometriosis, but fortunately for me I was 17 and was still classed as a child so got my surgery quicker. I really feel for you. What are you taking / doing at the moment for the pain? x

[CourtneyD in reply to Harpyiai]

Thank god it's not just me I feel like I'm crazy when i explain to people my situation as it's not very heard of. In all fairness my school have been really good I go to a different room to do my exams as I can have rest breaks and they have sent off a doctors note to get special consideration so hopefully I don't look too stupid and fail all my exams 😂🙈I have currently gone back to taking 300mg Gabapentin with ibuprofen and paracetamol but it's doing absolutely nothing. I have also tried Codeine and Naproxen which also didn't work but I have stopped taking as they made me even more dizzy.

[Harpyiai in reply to CourtneyD]

Sounds like a good school like mine. I am so glad they are helping you I am sure you wont fail your exams And with the painkiller situation, I was the same! They made me so dizzy and even made me hallucinate ahaha I would ask for Tramadol, only side affects are tiredness and sometimes make you constipated (sorry TMI, but you would need to know). I feel like these side effects are way better

[CourtneyD in reply to Harpyiai]

It's crazy isn't it! I get so dizzy and I only passed my driving test the beginning of this year and I think everyone thinks I'm too scared to drive but it's just I'm so dizzy I dont want to risk it! Ah I shall go back to the doctors and try to ask for that then it's worth a try! Yeah there was one point I couldn't leave my bed so I had my teachers send everything home but I have to drag myself out now to do the exams 😂ah I shall try that tonight! Thank you sooo much for your help it means a lot ! How long did it take for you to recover after your first surgery? As i haven't had a date for my op yet and I'm worried about starting Uni and the op being close together. X

[Harpyiai in reply to CourtneyD]

The dizziness is unreal ahaha Yeah I would wait until you find the right painkillers before driving. Once the exams are out of the way, just concentrate on your health okay? I got told at my 6 week post of my second surgery that I had the worst case of Endo she has seen, especially so young. So I want to help as much as I can and pass my experience on My first surgery was just superficial endo (means not embedded into any muscle or tissue) and was day surgery. Took me couple weeks to recover as it wasnt too intense. Second surgery, had deep embedded endo on my bowel, bladder, muscle ... basically everywhere except for my womb. I stayed overnight for basically 5 nights and recovery is going to be months. It A. depends how severe your endo is, and B your healing speed. First surgery was in July 2015, started my first job in October same year. But if you starting Uni is close to your surgery day (when you find out) I would let the Uni know See what they can do for you x

[CourtneyD in reply to Harpyiai]

Yeah I feel like it's still trial and error at the moment with the tablets. Oh my goodness that sounds awful! Glad it seems sorted now for you! Ah okay yeah I'm just stressing in advance 😂🙈thank you so much for your help xx

[Harpyiai in reply to CourtneyD]

I feel like us women with Endo, medication is trial and error :/ Sucks, but only way to find what is best for you Dont stress, as they wont help your endo! Just relax, take it easy and study when you can I would also suggest Mirena coil if they are offering any medication, as, if you are like me, contraceptive pills dont agree with me, and the coil only releases hormones your body needs. This will help control your endo too Any questions or anything, please ask, happy to help x

[CourtneyD in reply to Harpyiai]

Ah fab thank you so much! That's what I've been doing revising a bit then sleeping haha! I shall have to go back to the doctors and have a chat. Thank you so so much for all your help it means a lot !xx

[Queenbee1987 in reply to CourtneyD]

How do you feel the tissue wrapping itself as u say??

[CourtneyD in reply to Queenbee1987]

It's really hard to explain, I'm the worst at the doctors😂 it's just a horrible pulling and pinching feeling I get if I move too quickly. I feel like it's definitely growing worse as I could never used to feel it like this.

[Harpyiai in reply to Harpyiai]

What I did when I was around your age, I was on Tramadol, which is a strong painkiller which worked with me. My Mum at the time contacted the school, as I was in and out of hospital, if I could have work sent to me and if I could work from home. I went in when I could to have 1 on 1 sessions with my teachers. In Regards to sleep, elevate your feet (so put a pillow under your feet when you sleep) a bit weird, I know, but this helps with blood flow. Heat pads / bottles help also, I know it is hot outside, but this helps with muscle pain.

Any questions please dont hesitate to ask me, I am 19 years old, and just had my 2nd surgery which turned out to be extremely extensive. I am still in recovery a month after. I hope I can help as I do understand x

[nicole_44]

Awh bless you I really do feel for you.

There's nothing worse than the pain especially when you're trying to just get on with your life and it gets in the way.

Your lap maybe feel like it's so far away but believe me it soon comes around and getting those answers to your pain is so worth the wait!

Get as much rest as you can. Hot water bottles and baths help my pain. Mefanamic acid also slightly helped me.

Hoping your date isn't too far for you and best of luck. If you have any questions or need a chat I'm just a message away take care Hun xxx

[CourtneyD in reply to nicole_44]

Thank you so much for your help! Yeah I do find hot water bottles and baths slightly help. Thank you so much it means a lot! And the same for you ! Saying that I don't know a lot about it haha I have a book called Living with Endometriosis but with my exams I haven't had much chance of reading through it yet. I found that the diet change does help like not eating gluten and dairy products but with my exams I've just been stuffing my face so I do need to get back on my diet😂hope you're well xx

[nicole_44 in reply to CourtneyD]

I'm the exact same. Busy life style stops me focusing on my health. Hopefully once your exams are over you can focus on your diet and look for improvement and see if they work for you. You're strong, never forget that when you're in pain. Xxx

[CourtneyD in reply to nicole_44]

It does I do need to focus on myself more😂 thank you so much!xx

[SophieLilly1963]

I've had alot of gyny problems even scar tissue can cause Extreme pain it's horrible,have u tried a hot water bottle x

[CourtneyD in reply to SophieLilly1963]

Oh that sounds horrible! Yeah I have I find it works when the pain isn't too strong but as the pain is all over the bottom of my stomach it's difficult to locate where the pain is x