My situation (a rant)

[Bubble_by]

Okay, so last year I had an operation that was meant to solve a long-standing pain-related gynae problem and I had 18 months of peace, and the only time it was problematic during a period, but I thought it was normal as I've always had painful periods. Something I never thought I'd get - that is of course until August this year.

Since then, I have period pains that never went away. And to added insult to injury, my left ovary attached itself to my womb and I've a feeling my right one is also about to do the same thing as I've been getting pains there too.

I was fortunate to have a relatively quick diagnosis of endometriosis through a transvaginal scan. I was then told to wait 3 months for a follow up review.

Ever since then I can't help but feeling like I have been left to rot. No one really seems to provide any help bar a laparoscopy and god knows how long I'll be waiting for one of those. I also don't fancy surgery much as it can still come back or leave scars or various other issues and I've never had general anasethic before so I'm not exactly thrilled about that aspect of it either. I have been given painkillers, but I reacted badly to the first ones and ended up in A&E with a suspect minor stroke (it wasn't, thank goodness). And I'm now on codeine, which is better but I can't take it everyday due to reliance and it makes me horribly constipated, which then causes more problems due to fissuring and pain (see, how it all circulates?).

My prior pain is also flaring up as a result of my newly-found endometriosis and I'm so worried it will come back. It has got better since the operation but I don't want it being a permanent feature again after so long of not having it and my current gynaecologist isn't willing to do it again as it was only mean to be a one-off treatment. I understand this and I don't want to be given surgery I don't need especially as I think it's the endo that's causing this, but I hate being in pain.

I also have anxiety and of course, pain makes it worse but I seemed to be blamed for this more than anything as I get told 'it's all in my head' a lot. So rather than have a panic attack in full view, I sometimes take myself off to bed early and nap. Which works out better for everyone in a way.

I don't have a lot of social support. For starters I don't have a boyfriend and I somehow doubt that boys would want me. Modern dating is enough of a minefield as it is, with boys dumping perfectly decent girls because they're 'just not ready' so I feel like I'd have NO CHANCE whatsoever when endometriosis is added into the mix. Well that's what the last guy I was dating seemed to think anyway - he ditched me after I had my operation and did the old 'it's not you, it's me' but I knew full well it was because I couldn't have sex for 2 weeks. I've also a feeling it was what caused my ex to leave (I was unable to have sex for a LONG time so he went with another girl. Well, perhaps I shouldn't blame him really). Anyway, I've since been turned right off trying to meet any boys as I hardly think I'm a catch right now.

I also don't have many friends. My social life seemed to dry up after I finished uni last year. I have one but he's halfway up the country and has a lot on his plate so I don't get to see or hear from him much. I also don't have any social media (bizzare for a 24 year old, right?) due to my anxiety. And even if I did, I wouldn't be posting any glitzy selfies or luxury jet-set holidays, but more of me camped out in bed during a flare up, so it's not really like anyone would want to be friends with me either, as chronic illness just doesn't gather as many likes as smashed avocado on toast does.

I do have some family support, but I get told a lot of 'lots of people have it' or 'there's always a way' which is true, but doesn't really do a lot to help my current situation.

I've applied for jobs and maybe have some interviews in the pipeline but I can only hope they're going to be understanding about my condition. Also if there's a laparoscopy coming up, I hope that they'll be able to give me time of work and be okay with it - especially as I'm new.

I'm trying so hard to move on with things despite the endometriosis, but there are some times when it's just so horribly difficult to do it,especially like now with a flare up.

Anyway, sorry for the long post, but I had to let it out 💕💕💕💕

[DEvangeline]

Well done for opening up! It makes me feel really sad that you even think any man is worth your time and energy if he isn’t understanding of your condition. Endo doesn’t define you! You will find someone who loves you for you, relationships aren’t all about sex and someone who actually cares for you will be patient and understanding.

In regards to support I know you don’t have social media but Facebook has some excellent endo support groups - You can meet like minded people and also people from your area you could connect with?

Stay strong you’re a wonderful human being and you’re so deserving of love and care ❤️ xx

[Bubble_by in reply to DEvangeline]

Awhhh thank you so much! I think that's the kindest thing anyone's said to me in months 😭😭😭 💕💕💕💕

[Purplewitch18]

Oh wow, you really are in a dark place right now, which i totally understand because many of us have been there.

Firstly i second the first reply, it is hard to open up like that but really good to get it all out so well done for making yourself do that. And this is a great place to do it because we all understand endo and how it affects our daily lives, so there is lots of understanding, advice and support here ❤️

Secondly, yes they do leave us to rot after a lap, you can see your gp and talk about birth control for the meantime if its something you think may help for now. As you probably know, no one knows the cure right now so its just about surpressing endo or managing pain, whether thats through different pain relief, bc or diet and suppliments, its your choice. You may have endo, but its your endo, you find the way you want to control it and do lots of research on that.

Thirdly any idiot who ditches someone for having an illness is not worth yout tears!! I mean, do you really want to end up with a loser like that, think yourself lucky he jogged on!

Fourth, try some mindfulness, medetation, you will find what works for you. You have got to change your way of thinking, even in the darkest days just find a positive, doesnt matter how small, there will always be at least one. Every day, its so important. You will still have bad days and cry and have outbursts but you got to pick yourself back up and keep on fighting.

When the pain is too much then rest but get up and do things as much as you can, a lot of the time i find i feel better for it.

Workwise i know how hard that is, could you do flexible hours so you could take time off on a bad day or work from home sometimes? I work for myself and will have to change a job every month and i know i will, so i work part time to enable me to fit them in somewhere else.

Lastly, yes you have endo but thats not your whole life. Youve got to turn it around you deserve to be happy. Just remember, you can do this!

And sorry about any typos, my screen is cracked so its hard to see lol xx

[Bubble_by in reply to Purplewitch18]

Thank you for your wonderful comment 💕💕 it's really helping me ☺️ xxx

[Purplewitch18 in reply to Bubble_by]

Youre never alone in this ❤️