Anxiously waiting.

[Cjc92]

Hello. I'm a 25 year old woman with lots of gynea problems. I currently have been diagnosed with PCOS (diagnosed around 18. Again today US confirmed), CIN3 (LLETZ in 2015), Vulvodynia and currently being assessed for endo. I am due to have a Hysteroscopy and Laproscopy. Also we are looking for polyps and fibroids. I'm very anxious and on several medications. I'm tired of not being heard and I feel I'm being a nuisance. Please any support would be appreciated. Thank you for reading x

[Cleo1986]

I’m sorry you feel that way, it can be really tough waiting for diagnoses and feeling frustrated, and feeling dismissed by healthcare professionals. I can say after my first lap when they said my endo was severe and they couldn’t believe I hadn’t ended up in hospital before this it felt validating and at least I had an answer. I hope you get the answers you need and there is always support on this forum. X

[Cjc92 in reply to Cleo1986]

I'm truly hoping once they'e in there they see just how bad it is and then kick themselves for leaving me so long. I know there is so many women experiencing the same as me and I just can't see why we have to put up such a fight to get the answers and treatment we deserve. Thank you so much for replying xxx

[Amyjane88]

Hi hun. Sorry your having a hard time. I have been diagnosed with pcos for 12 years now. Last year I had a hysteroscopy as a polyp was seen on ultrasound. I was put to sleep for it as it was large . I woke up with period type pain but that got better the next day I had some bleeding for a week.

On Thursday I am having a hysteroscopy again as I have a new poylp...less than a year later !!! I'm also having a laparoscopy to look for endometriosis at the same time. I put a post up not so long ago asking for recovery tips and had some great tips. If you go to my profile have a look at the post. You may find some info helpfull. I wish you the best of luck . Any questions feel free to ask xxx

[Cjc92 in reply to Amyjane88]

Thank you Amy Jane. You poor thing. I will definitely look now and also follow you if poss.

I'd be really interested to see your experience as I just feel so alone right now.

My aunt advised me to come here and I'm so glad I did.

What are your symptoms if you wouldn't mind me asking? I'm fairly sure if they could of fobbed it off with just PCOS they would very happy to.

I will check your profile now. Thank you very much darling. Im so great full to be around like mind people. Gives me a little bit of clarity that I'm not totally crazy xxxxx

[Amyjane88]

Hi hun. Yes please do follow. I was diagnosed with pcos when I was 18 then tried every hormone going for 6 years to get pregnant with no joy. Had spinal surgery came off everything then fell pregnant with no help. Little girl is now 6. So thankful !!!

Now the endo.... I have always had very heavy and very painfull periods. 2 years ago I started having really really sharp up my vagina and into my belly. That bad I would scream out I pain. It only last a fee seconds but can happen lots. They think this pain is adhesions. This past year I have period pain every day all day. I also can get the sharp pain when I wee.

I am not so much worried about the opp I am more worried that they will not find anything !!!

I will keep you posted and let you know how the opp goes on Thursday

Xxxxx

[Cjc92 in reply to Amyjane88]

Do you know what that is my biggest fear!

If they find nothing I'll be so upset in myself because I'll feel they were right in their ignorance.

But in all honesty I know they will find it, it just worries me about how bad the diagnosis may end up being.

I am very lucky to have naturally conceived both my babies ( K my DD is nearly and C my DS is 3 on Monday yipeee). So I am currently considering whether it is worth asking for a hystorectomy but then again I do realise they can take it away but not put it back and I'm worried how I would feel after the op. I need to weigh out all the pros and cons but right now I'm so tired and in so much pain I just want to lie in bed ... which then as it is a Saturday makes me feel awful because I shouldn't be stuck in bed!

I also have lots to do lol but it is only 11 so as long as I can brave it to town before 2 I should be OK 🙈

Thank you so much my angel

Xxxxx

[Amyjane88 in reply to Cjc92]

Yes I have also thought about hysterectomy too and like you worry how I will feel after even though I know we will not have anymore kids. Good luck sending hugs xxx

[Cjc92 in reply to Amyjane88]

Thank you so much Amy! Fingers crossed we don't have to face that path xxxx

[F10NA2]

Hi Hun, hope you’re ok, I’m in the same kinda boat, diagnosed CIN3 LLETZ 2008, PCOS 5 years ago, infertility 2015 and ENDO 2017! I am so frustrated with the consultant I have been seeing since 2012, I am no further on, my hormones are all over the place, I’m in agony day in day out, I get occasions where I’m spending hours in the bathroom either just throwing my guts up or throwing up and diarrhoea! I’m not ovulating hence the infertility and I work with babies full time which hurts so much!! I have just recently been to my GP and asked for another referral to a more specialist hospital because My consultant isn’t very supportive so I’m just waiting for an appointment, I wish I’d have done this a lot sooner but if you are unhappy at any point with the support you are receiving don’t forget you can go elsewhere, don’t leave it late like me!! 🙈

I really hope that talking to people on here helps and makes you feel a little more at ease because I know it helps me. I suffer with anxiety/depression anyway and I know that talking about things always helps.

If you ever need anyone to talk to you know you can always message me 👍🏼

Take care, lots of love

Fiona x

[Cjc92 in reply to F10NA2]

Thank you so much Fiona.

You poor thing. It is so sad to see how your being treated and your symptoms. It really is.

I really hope your new consultant is more apathetic because it really is something we deserve support in. Not to feel like a loony!

I too suffer with MH I have BPD which I believe they love to use a a curve ball instead of doing anything about my actual reasoning for being there! I am on medication for this but i wouldn't consider my MH a factor in any of my vaginal issues nor should they!

The US can't and will not lie (so there we go not all in my head)

And hopefully the lap will also confirm what we all firmly believe and I can finally be treated and start living a "normal" (whatever that is 😅) life.

Please let me know how you get on I really hope you get all the answers and real support from the professionals that you deserve. I will follow you if OK?

Love & Light sent to you.

Xxxxxx

[F10NA2 in reply to Cjc92]

I love the way you said “normal” 😂 what’s that!? Lol

Yes it’s fine to follow me and I will follow you to if you don’t mind?

Not that it’s nice any of the issues we have but it’s good to speak to people who go through the same thing, good luck with everything!

When are you having your op?

Xxx

[Cjc92 in reply to F10NA2]

I know right 😅

No of course I don't, that would be lovely.

If definitely is! My Aunt introduced me to the group last night and she said it was a brilliant way of talking to people going through the same and it has already helped me! 😍

Thank you and good luck to you too!!

I am calling Monday morning to speak to my consultants reception to book both in, thankfully both being performed together!

Just waiting for Monday to come now. But it is my sons 3rd birthday that day so I'm going to try and let it not dictate my day & just try and relax about it all.

Thank you for replying xxxxx

[F10NA2 in reply to Cjc92]

I’ve had a laparoscopy and then a laparoscopy and hysteroscopy together, I was fine after both just really tired and a little sore!!

My second op was to remove my right ovary but when I came round she came to see me and told me they couldn’t do it because my ovaries are wrapped up together in “something” which would have meant taking both which she didn’t want to do. I’m was so angry and upset because it got me no further!

Keep me informed about your date, you can always private message me if you like.

Xxxx

[Cjc92 in reply to F10NA2]

I have just read your posts and caught up! Jesus you poor thing! Please let me know what happens don't give up!! You deserve better! I will definitely keep you updated and would love to message you. Hopefully Monday I get some sort of date for something anything!!!

Lots of love xxx

[F10NA2 in reply to Cjc92]

Fingers crossed you get a date soon, keep me posted! Lots of love & hugs xxxx

[Cjc92]

Thank you Fiona!! Genuinely. I will do 100% so glad to be in this group. Felt as though no one was going through this and now I feel like we are being so let down as women. There seriously needs to be more awareness about the condition and the diabolical lengths in which we need to go to too be seen or heard!

I hope you're having a nice Saturday night lovely.

Lots of love. Xx