Diagnosis - finally!!

[Faith27]

Well hello strangers

I've not been on here for a little while now. For those of you who kindly read my last post, you can probably understand completely why!

Thanks again for all of your kind words during such a difficult time in my life.

I just felt that I should update you on where I'm at really :).. without going into the relationship stuff, that's still very much an ongoing situation which I'm giving myself lots of time to work out!

So I had my laparoscopy yesterday. The outcome is that I have endometriosis on both of my ovaries, one of the ovaries being fixed to my womb and endo found within the vagina which I'd not heard of before! My gynecologist has always been lovely but she genuinely wasnt expecting to find all that she did. As a result, I was too complex for her to try and 'fix' and I'm being referred to a specialist (which is great).

While I'm pleased that I finally have a diagnosis.. I'm left feeling a little bit shocked to be honest. I was adamant I had endo but having been TTC since the age of 25 I cant help but feel that at this stage, endo on the ovaries is the worst place for it to be right now! My understanding is that worst case, it could have affected my egg quality and we all know what that means for the future! It's a concept I'd never really imagined.

Obviously moving forward, I have another op to look forward to. But I just wanted to post a message out on here to say that if your adamant things arent right, please do your research and speak up! Shout as loud as you can because I should have had these issues looked at years ago and if I did, I guess I may not be in the position that I am right now - relationship included.

I know I'm still very young and filled with hope, for the future, for life, for happiness.. whatever size or shape that comes in!

I dont actually know where I'm getting at with this post lol sorry everyone! I think I'm expecting to understand everything a bit too quickly so I'll try to get my words out a little better next time but I just felt a word dump would be helpful for me!

Good luck whatever stage of this journey you're all on. Sending lots of well wishes xxx

[MissSaoPaulo]

Hey hon, hope getting it all out helped you to feel better. While it's not the best news from the lap, at least you have a diagnosis now and a referral to a specialist so you're a few steps further forward than you were yesterday, and knowledge is power - something I've found myself saying more than once on here. You're so right that we have to be our own advocates and keep pushing for answers.

Good luck with your next steps, whatever they may be xxx

[Faith27 in reply to MissSaoPaulo]

Thank you lovely lady! So so true, and definitely a few more steps forward. Hope you're doing well xx

[Kitcat12]

Totally know what you mean, it's so frustrating when you know something's not quite right, at least now you can make a plan to move forward towards you goal, whether that be with or without a partner and with or without a child in your future. Best of luck x

[Faith27 in reply to Kitcat12]

Thank you Kitcat, that's certainly the case! In some ways, I'm lucky for them to have found a potential cause for the issues.. I cant imagine being unexplained so at least I now know what I'm working with hope all is well with you xx

[Kitcat12 in reply to Faith27]

Such a positive outlook!! Better to know than not know for sure 👍🏼👍🏼 I'm ok thank you lovely, soldiering on x

[Faith27 in reply to Kitcat12]

Aww I'm glad you're doing ok! 💖 xx

[sammejayne in reply to Faith27]

How did you convince them to do a lap? I am unexplained for four years I’m sure there must be something wrong x

[Faith27 in reply to sammejayne]

Hi lovely, I've been having severe pains and endo related symptoms for around 14 or so years since I first started my period!! Over the years it's got progressively worse and while I wouldn't have wanted a lap without knowing if i had it or not.. i was pretty certain with the infertility issues at such a young age that there just had to be more to it. Have a look on my page, there is a picture I shared a while back which talks through the endo symptoms..I literally had every single one!

It's not always endo that's preventing fertility as it can be so many other things but I think deep down, I just knew. Research is key!! Xx

[Hidden]

It’s a very frustrating to get a diagnosis for endometriosis- it took us 5 years & 10 months of TTC & 3 years of unexplainable gynae issues.

I wish it was a simpler way to diagnose it 🤦🏽‍♀️ hopefully in the future there will be. I’m always raising awareness of it around others- people think it’s just bad periods 🤦🏽‍♀️ it’s not it can cause infertility, fatigue, severe abdominal pain throughout cycle, bowel issues. The list goes on!

I had3 surgeries within 13 months ;June 2017 with my fertility doctor I then conceived but miscarried endo returned 🤦🏽‍♀️ March 2018 with a general gynae & July 2018 with an endo surgeon as it was all over my bowel & no other gynae could tackle it. I then fell naturally 2 months later. I followed the anti inflammatory diet, took a lose dose aspirin( until I had a positive test which my fertility doctor issued low dose steroids for first 12 weeks as my nk cells were slightly raised I had it tested private) tried a round of clomid ( my fertility doctor was happy for me to try it again previously I had 4 failed rounds) took bee propolis as it’s healing & helped other endo sufferers conceive, used a progesterone cream from days 8-26 if my cycle just until I took progesterone pessaries ( my fertility doctor allowed me to take those from a positive test to 12 weeks even tho my levels were “normal”). I’m sure the steroids & progesterone pessaries kept my baby safer in now 38 weeks & 5 days.

But I couldn’t say which was the biggest factor in conceiving but I think having all the properly by a expert in the field made a big difference he wasn’t much of a a people’s person but a very good surgeon!

The fact yours is complex you will need a referral to a BSGE registered specialist you can visit bsge.org.uk to find your nearest centre.

I found the endo nurse really understood endometriosis like no other medics can it’s such a specialist area. I’m still in touch with her now.

I was personally relieved to have an explanation for the infertility I was lucky it was just endo & once treated I could fall. And I’m not young 🤣I was 35 first time we fell (miscarriage) & 36 when I next fell! Hope that can give you hope ❤️ you can get pregnant with endo & have a healthy baby xoxo

[Faith27 in reply to Hidden]

Aww thanks Jess, I hope you're doing OK!? I always love that you comment and share such positive words and your story - thank you. You have given me so much information and insight, past and present so thanks

You're right about the BSGE specialists.. I'm currently investigating if that's who I'm being referred to as I dont feel this is the case. My surgeon came around very quickly after I came around and I actually made some quick notes after asking for a pen and paper off one of the nurses Haha! She didn't think I would remember so I thought, right! I'll write it all down. I recall asking if the specialist she was referring me to was a BSGE however she just told me that she is a specialist and operates in the same hospital. I have recently tried to get hold of the only BSGE reg centre in Wales (cardiff) so not too far; however the lady I need to talk to is off until next week. I'm going to ask about them and their waiting lists as my surgeon said referring there would be 18 months to 2 years!! Again this is just recalling what conversation we had straight after my OP. As it's in such a tricky place, I strongly feel that the right person needs to do it so I'll sure not be running into the first person that's available and it looks as though you having your treatment done by the right people has got you to where you are right now - hence the importance!! Xx

[Hidden in reply to Faith27]

I’m very impressed you got a pen & paper after the op!

In my surgeries I was too spaced out to do that esp the last 2!

12-18 months sounds a ridiculous time wait. The secretary will be able to give you more info on what happened ie the referral. If it’s complex endo it def needs a bsge registered endo gynae. Also the specialist will recognise all forms of endo & do a “proper” clearout 🙂 I’m sure it will be.

If the wait is bad you could ask to go on a cancellation list or pay privately to see one that works both nhs & privately most do, bringing all your surgery details with you then the specialist could place you on her/his nhs surgery list.

I was refered to a endo specialist by my fertility doctor & got an appointment within 5 weeks! As it’s rare to get a referral to an endo specialist they only issue them when it’s complex endo the lists around my area are shorter to see one. The op lists were awful tho quoted 30-40 weeks but as my symptoms gotten worse ( I was struggling to cope) I had my GP write to my surgeon & had my op within a few weeks of the letter. There are ways around these things! Having supportive medics helps 🙂

At least you have your answers & now can make a pro active plan 😊 personally I found it harder being unexplained infertility & trying all those years in vain 🙄

You’re on the right path & you will get there you have much better chance now you know what you are dealing with & can get it treated & fall 😊 because it will happen for you 😍

I wish it was more standard to check endometriosis when ladies struggle with infertility particularly when all looks “normal”... xoxo

[Faith27 in reply to Hidden]

Thank you. I know the nurses in the recovery room all looked so shocked when I was writing everything down and asking sensible questions within 10 or so mins of coming around hahahahhaa!

You're right about the unexplained feeling worse. I always knew that the TTC was in vein and that there was a reason and that frustrated me more than anything because no matter how many professionals that tell you to relax, or its probably not endo, it just ends up winding you up!! I'll deffi get in touch with the secretary next week and ask about their timescales. I'm more concerned about having the right person for the job than getting things moving quickly now I know what I'm dealing with xx

[ArienAnwamane]

Hi Faith. I'm sorry to hear of your diagnosis, but equally I hope it isn't too late for the specialist to help you. I have my fingers crossed for you!

[Faith27 in reply to ArienAnwamane]

Aww thank you 💖 such kind words. Hope you're doing OK whatever stage of the journey you're at too xxx

[ArienAnwamane in reply to Faith27]

Thank you x

[AnnieAnnie]

Hi there, I'm glad you finally have some answers although sounds like you have a way to go yet with another op. It's frustrating not being listened to. I hope that your treatment goes well going forward. Sounds like you've been through a lot already in your journey and I wish you loads of luck. I have an appt with my GP in a couple of weeks when I plan to ask to be referred for investigations into endometriosis 🤞🏼 I can get some answers either way. I have also felt for years that ttc was in vain, it's like deep down I knew I would have trouble/wouldn't be able to, having suffered with extremely painful periods (and other symptoms) since I was 11/12. Sending you hugs xx

[Faith27 in reply to AnnieAnnie]

Aww bless you! If your adamant things arent right, make sure the GP listens to you. I think the risk when your TTC is that professionals think you have self diagnosed and they disregard all other symptoms you have been back and for to them with for years! Mine certainly didn't take my endo stuff seriously because I was TTC however I was lucky that my gynecologist agreed I should be checked out. Although even before the OP, she was hopefull it would just likely be a dye test and nothing endo related lol. It's frustrating knowing you have been trying in vain but oh well! Lol good luck for your appt lovely, let us know how it goes xx