23, No idea what's going on, advice needed!

Hiya, I'm 23 years old.. but I would like to point out I have the body, and mindset of someone who is about 18 years old. Just need to clear that up first.

For just under 3 years now I have been seen by my gynaecologist, where ive been brought into hospital/doctors with severe periods/pain.

I can't quite remember how it all began, but on 20th September 2014. I had my first surgery to have a cyst removed it was large, the same size as a melon. I was tearful and scared, stressed out to the max but none the less I got through it.

I was brought to hospital months later for another surgery in May 2015, as they had found another cyst on the other ovary that needed to be removed.

The same thing happened AGAIN, where I needed another cyst removed- June 2016.

Since that's surgery, I have had nothing but problems. Including period pains out of this world. - all this time - I've had so much pain and discomfort! pretty much every week there will be a two day period where I'll be in agony, I'll need oramorph at home as well as top ups of paracetamol and coffee to get into my system quicker. It cures the pain to a degree, but it certainly makes my head spin. I have no energy where I have these down days and just sleep and nap.

From this my body has changed and I've got weight problems. I'm "90" on the scales at the hospital. I presume it means "90kg" is that bad!?

I'm using slimfast shakes in the morning and at lunch time just to try and loose weight but it's a real problem where I can't seem to exercise because I'm hurting all the time.

In my May surgery (the second one) I was fitted with the Marina Coil. I presume it's working - because I haven't had a bleed since, just old blood spotting, nothing serious.

However. Here is where the problem lies, I'm in hospital again. Right now!!! I was brought in because I was in so much pain, and kept collapsing and going really dizzy. It was destroying my life, as this all happened in public places, and at home in front of my boyfriend.. I couldn't think of anything worse!

I've been in hospital since Monday. (I would like to point out I've not "pood" since being in hospital yet... I've eaten and drunk where possible. I don't understand. Is this even normal? Is it anything to worry about? I just do not feel that I need to go.

Anway, being in pain I've been dosed up with tons and tones of painkillers, oramorph, codiene, paracetamol.. since being here..

Day1: I had a scan, I have high anxiety so I'm really tearful anyway. But it really hurt being scanned. Like the pressure, so of course being highly anxious I burst into tears. Anyway he confirmed that I had not only 1 but 2 cysts, on each ovary! But one is smaller than the other and they have both got smaller since the last scan. So we're talking about 6cm" overall on the right and 3cm on the left.

The doctor came round and said he won't do a surgery as he doesn't deem it an emergency or an essential thing to do... this wasn't my normal doctor it was someone different. Here is the conversation summary.

"Why? I'm in so much pain. Why won't they!? It'll solve everything if I have them out.." his reply..

"It's intrusive, we do things by the book, your young and having surgery and going under annestetic is dangerous and not something we want to do. It could affect your future to have children!"

"But I've had surgery before" I say, "I just want them out, I feel medicine covers up the problem rather than dealing with it head on"

"Ok" he says with student doctors and another doctor just starting at me sobbing feeling as if I'm another one of those problem paitents. "I'll see what I can do" He says this in a tone of voice that really says he isn't going to bother he just sees me as dramatic.

By this point I've had enough, I've been here 2 days and nothing seems to get done, I've been in floods of tears. I have a drip in one hand and the other wiping my eyes from sobbing so much. I've also go no eyelashes the tears have taken those away with them.

I rung my mum - she and I are ever so close and even she was shocked. It was almost the feeling of being given medicine to shut me up rather than just dealing with me.

The doctors came back and said they can't operate or do anything without the say-so from my consoltant who's away.. he's a nightmare to get hold of and always seems to be on leave! So they just need to manage my pain.

My theory is, what about another paitent who has a severe issue and needs operating on as an emergency- they'll have to operate then? Without his confirmation!? Frustrated and angry and ultimately bored and hurting... I rip off my wristband and pull off those stockings.

My boyfriend appeared just after and saw me sobbing. I hadn't eaten, I was tired and wasn't sure what was going on. I had my head in his lap and just cried, overwhelmed for his appearance to visit me, and also because the house keeper snapped at me "nothing left" when I ordered some tea. I just want to point out I didn't starve- my man bought me a Costa hot chocolate and a pizza sandwich.

The other nurse also came around and reassured me all will be okay, this nurse seems to be the only one that understands me and really sympathies with me. She was really nice and made me smile and laugh.

Next my specialist's assistant came over to talk to me I said how desperately I wanted to feel better and just have a surgery.

((I go into my final year at university in less than I week. I feel like calling them and saying "I'm done" I just don't see how I can go back without this issue fixed!))

((The nurses and doctors and everyone here has been to uni, and got their qualifications, I feel like they are stopping me from mine. ))

Because I'm that awkward patient who has no idea whats going on, or why these cysts keep coming back the way that they do! Could it be the Coil causing all the problems? Could it be that my body is younger and different where I started my periods at 16/17 years old?

They've put me on Pregablin? To sort of suppress the ovaries which is what I've been told, has anyone else been on these medicines? Do they work?

My surgeon has just come round to see me, he understands everything. My heightened anxiety, the fact I start university in my final year soon! He's going to scan me himself in a weeks time to see what's going on, and what he can do! He's very kind even though he's a nightmare to get hold of, and really understanding of me.

I just want some clarification that I'm not alone, I will one day be able to have children, even though I have endometriosis- we'll Add-Oh-No-My-Osis? I want to know I'll be okay, and we'll... that what I've said people can relate to. Because I'm desperate. I'm so scared.

Thank you

3 Replies

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  • First of all I am so sorry that you have had to go through all off that but you are not alone. I recognise the pain and it is torture. After the struggle of not knowing the cause of my pain, endometriosis was suggested and I was put on pregabalin as well. For me and others that I have heard off it did make a difference, they can also try lots of different doses to see what works for you. I was then put on injections which induced menopause, so don't be surprised if that is ever suggested and they also helped, although had some not so fun menopause symptoms then.

    I was half way through my masters when I was hit so badly with the pain that I then took 4 months off uni and even when I tried to get back into it I found it horribly hard. But through support from my family. friends and the university giving me extensions I managed to finish. I was offered to leave it and come back next year or give up altogether and I really did want to give up, but I am so glad I carried on. Please try and see what your university will do to support you and go back for your final year and show endometriosis it will not stop you. I found it gave me something I could sort of control and work on when my body wasn't acting the way it should.

    I hope knowing there are others out there will help, that is why I am here too, to know I am not alone and not going crazy. Take care!

  • Hello! Thank you so much for your reply!

    We have the same name :) I'm a Becca too!

    Was that the Zoladex injections that induced menopause? I was put on them too, but they caused a whole body rash all under my boobs, chest and underarms!

    I will go back to university I just feel as though I want to stop.

    I have an appointment with my specialist next week, he's going to sort out if the Pregablin is working (I'll be on it for a week then!) then he's going to scan me himself and go from there!

    Thank you for your support though. :) It's made me smile tonight

  • And we are both 23.. spooky!

    No mine was Proztap injections, so maybe that one might not affect you the same? I wish it was possible to go through all this and try and treat the pain without all the side effects and bad reactions!

    You will feel like that more than once! But I bet you can do it :) I would probably let them know from the start though just incase a surgery is in the future for you or time off because of pain.

    That is good you have an appointment, I don't know about you but I always feel better when I have an appointment waiting in the near future just incase anything happens, always good to stay in the system right? I really hope it gives you some relief!

    No worries I wish I had found this page when I was going through the worst of it! Keep smiling and let us know how you get on :)

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