New to this page, hello :)

[Blue97]

hi everyone, I’m currently in the very early stages of being diagnosed. I’ve recently been to see a consultant who believes I do have endometriosis but obviously surgery is needed to confirm. I have a large cyst on my right ovary that I’m waiting for another scan to see if it has gone (I really don’t think it has). I’m currently having a lot of pain down my right hand side and in my leg which is a new symptom. I just feel so alone with this and like no one really understands the pain and the impact of this diagnosis hanging over me. I’m terrified for surgery. And I’m not sure how to process that my life may now consist of more pain, multiple surgeries etc. I’m sure there are so many of you on here with far worse circumstances, I just wanted to reach out to others that may understand this better

[Scoutybob]

Just popping up to say a hello! It's a long road. I'm still in quite early stages and learning it's a very hard process. Have they offered you any scans yet?

I was diagnosed via a private ultrasound in November (first NHS appointment was Sept). I then had an MRI and found out that I had very severe endometriosis including my bowels and adenomyosis. I've been referred to a BSGE clinic but the waiting lists are extremely long for surgery. All I can say with that is you have time to adjust to the thought of endometriosis, research and inform yourself.

A lot of people have recommended the book Heal Endo which I want to get soon.

There are lots of support groups on Facebook that are brilliant.

Wishing you all the best x

[Blue97 in reply to Scoutybob]

Aw hello :). I have had one scan in January, which I had to fight for and this found the cyst in my ovary. I’ve got another one in a few weeks to see if this has gone. But in between I went for a private consultation as the GP as useless. The private gynaecologist advised based on my symptoms endo is likely but need surgery to confirm. So I’m just waiting to have my other scan and also speak to my GP about pain management options.

They didn’t mention an MRI though…should I push for this before having surgery?

Ah I’m so sorry to hear that, I hope you aren’t waiting too long - although I imagine it will be. Yeah you’re right, time is definitely something I do have to get used to this…

Ah that’s good to know thank you! I will look into this! I’ve tried to look for support groups too :).

Thank you! Wishing you all the best too! X

[Scoutybob in reply to Blue97]

An MRI doesn’t happen in all cases.

With me it was done because my private ultrasound indicated severe endometriosis and numerous issues so they look at MRI then to map everything prior to surgery because it can be a complex surgery. They might get more info for you after another scan x

[Blue97 in reply to Scoutybob]

Ahh I understand! Thanks for clarifying. Hopefully they can. Really hope all goes well for you in your journey x

[Sunset-lady]

Hi, I think what you need to remember is that it the pain from endometriosis alters throughout your life and your lifestyle can really affect it too. I'm 51 with stage 4. I had terrible periods as a teen then late twenties they improved. Bad in my mid thirties then improved. Pain wise- I've had no pain since my mid thirties. I do have other stuff going on though. I eat well (stay clear of ultra processed foods and review how you tolerate other foods like wheat). Exercise is crucial - running did me a lot if good. Sleep is important and I don't drink alcohol. Finally, managing stress is important. I wish I'd known I had endometriosis earlier (I only found out last year). I would have handled a lot of things very differently and I would have been MUCH kinder to myself. Knowing you have this is powerful. This disease hasn't stopped me doing things I wanted to and it won't stop you either.

[Blue97 in reply to Sunset-lady]

Hi, yeah I hadn’t really thought about it like that. I just kind of assumed it was only downhill from here. But that’s good to know that it can get better! Thank you for giving me your advice on what can help! I certainly do need to do more exercise and ensure I have a healthy diet. Stress is also a big factor in my working life so I guess I really need to figure an out a way to manage this! Thank you for your kind words and wish you all the best with your journey!

[AR2008]

Hello,

Firstly, you will never feel alone on here. This page has given me lots of advice and reassurance about all the weird and wonderful symptoms and side effects of Endo. And I was in your exact position 1 year ago, nearly to the day- not really sure what was going on but knowing something wasn’t right. I also had a cyst on my right ovary- 15cm mine was by the time I had it removed and I didn’t even know I had it until I had the initial ultrasound. Has your GP told you want size they think your cyst is?

Right sided leg pain which goes right down your leg- that’s my nemesis too! I’m not sure what causes it- cyst or Endo in general- but it’s a bloody nuisance. I was told it can be an effect of Endo but like you, I just want it gone. I’m hoping to see a physio soon to find out if it’s nerve pain or muscle pain and see if there is anything they can do to solve it.

Surgery done by a specialist Endo consultant is nothing to be feared. I had mine in January, I was under 3 1/2 hours because I had quite a bit done. But they saved my ovary, got rid of the cyst, and took away 80% of my Endo. I feel better for it and my personal experience of recovery wasn’t too terrible. I know that this probably won’t be my last surgery in my life, but I’m of the view that I just had to take it as it comes.

Hope this helps! And I hope you get the outcome that you want- whatever it is! xx

[Blue97 in reply to AR2008]

Hiya aw yeah I’m glad I joined this page as I already feel much less alone. Ah wow! That’s so weird time wise. The last scan showed it was around 5cm, so nothing compared to yours. But I feel like it’s got bigger - just a gut feeling. But my next scan in a few weeks will show more I guess.

It’s driving me insane! It’s everyday at the moment and normal over the counter meds aren’t helping. Yeah I’m unclear too, from what I’ve read I think it can be as result of either of them?!.. I hope you get some answers as it’s an awful pain!

Ah that’s great, glad to hear they managed to get 80%! I think I’m just worried as it’s all unknown. I’m sure I’ll be fine once I’ve had the first surgery. I think that’s probably the best view to have!

It helps a lot thank you! To be honest, I’m just tired of being in so much pain so for that to stop! - however realistic that is. I wish you all the best too! Xx

[Bk27]

hey lovely,

Im in exactly the same position as you at the minute and you are right it is really lonely! You have all the thoughts of what the possibilities could be and you dont even know if you have it for certain yet! I had a scan which showed a cyst and then when i had the second scan it had gone but theres one on my other ovary now, both blood filled. Im waiting for a 3rd scan with the gp whilst i wait for the referral.

For me personally, a group like this is the best help because you realise so many other people are going through it. Im only 22 and the thought of a life of pain has been really scary.

Good luck going forward x

[Blue97 in reply to Bk27]

Hi! yes exactly! So frustrating and overwhelming. Glad I’m not the only one! Ah no, sorry to hear you have another one on your other ovary. Do you know your plan for moving forward?

It has helped so much, best thing I’ve done coming on here. I can’t believe how many women are affected yet the process is so poor! I completely agree and understand that! It’s a very daunting thought to know that life going forwards is going to be so different.

Thank you, same to you! x

[Bk27 in reply to Blue97]

My gp is going to carry on with the internal ultrasounds every few weeks until I'm seen by gynaecology, after that i have no idea!

[Blue97 in reply to Bk27]

Ah wow! Hope you’re not waiting too long to be seen by gynaecology !