Finally!

[Bramble_B]

I'm shocked to have something to celebrate when it comes to my health! And also shocked that I'm celebrating endo but if I'm going to have chronic pain, I'd rather know its name...

Today I went to Dr Dewart (endo specialist at Spire, in Edinburgh), and he confirmed he's pretty certain of an endometriosis diagnosis. It's been a long road of invalidation from doctors, and sometimes myself, but it's such a relief to be believed.

Very scared of surgery so the laparoscopy makes me anxious, but happy to be a step away from having the truth in my hands.

[CrochetDogMom]

Just replying to say, I'm with you on this one! I was diagnosed this week and the relief I felt knowing there is actually a reason for all my symptoms! It's such a strange thing to feel you're "celebrating" a diagnosis, but after years of going to the Drs to be told they can't find anything, it's so validating and reassures you it isn't all in your head!

I haven't been told I need a laparoscopy yet as I haven't seen the gyno. But I imagine as I have adhesions I will likely need one. Also very nervous for this but hoping it gives me some further answers and a bit of relief from symptoms.

You'll have to update how you get on if you get sent for one before me. Did they mention any timescales at all in relation to waiting lists?

[Bramble_B in reply to CrochetDogMom]

Congrats on your diagnosis! I do hear the surgery is very manageable, but it makes me nervous too 😬

I'll definitely put through an update when the time comes - they said it will be 6 weeks from when I book, so just need to to sell my soul to the devil for the money...

I've gone private for most of this process, not for lack of trying with the NHS! My GP surgery is especially slow, and my referrals for tests/specialists were mostly rejected or added to a year-long waitlist.

I am privileged that my parents have helped me a bit with the bills, and I'm in an industry where it's easy to pick up extra work.

[CrochetDogMom in reply to Bramble_B]

I'm so sorry to hear you didn't get any luck with the NHS. I ended up paying for an online at home hormone test before Christmas. And they highlighted some hormone abnormalities and flagged up I may have endo based on my symptoms.

Initially booked in with a Doctor at my GP to discuss but had to rearrange and was booked with a doctor in training. I honestly feel like it was the best thing to happen as they listened to all my worried and referred me for scans and tests as I think they probably didn't want to miss anything!

I'm hoping there isn't too much of a wait for me as now I've been diagnosed I just want answers and to get the ball rolling. How did you go private? Have you got insurance or are you having to pay everything upfront?

[Bramble_B in reply to CrochetDogMom]

Oh that's interesting- what test was it, out of curiosity?

Very glad to hear the doctor in training covered all the bases! Finding someone on the inside to champion your cause is so valuable.

I have a heath cash plan through work, but burned through that pretty quickly as everything I needed was in the "diagnostics" category. Since then, it's been getting help from my family and kissing my savings goodbye 🫠

[CrochetDogMom in reply to Bramble_B]

He referred me for a repeat cervical screening and swabs, further blood tests for my hormone levels and abdominal and transvaginal ultrasounds. I was diagnosed on the transvaginal ultrasound because my left ovary is adhered to my uterus. Now waiting to be referred to gyno who will hopefully schedule a lap as soon as possible. 🤞🏻

So are you paying for the full cost of your laparoscopy then? How much is that costing you if you don't mind me asking? I've read on another thread that people tend to have 2 weeks of work after it, more if they do a more active job. So this may be something to consider. 😊

[Bramble_B in reply to CrochetDogMom]

Ahh okay - Fingers very much crossed for your lap being scheduled asap!

I get the full pricing breakdown on Monday so will come back with an update, but I was told to plan on at least £6000. Gulp.

Luckily I'm a tech nerd who works from home! But I'll be sad waiting to go back to my exercise 😕

[CrochetDogMom in reply to Bramble_B]

Oh wow, that is a lot isn't it! So lucky to have had savings and family who can help. Its so sad that the NHS being so pressured leads to people having to pay out of pocket. I love the NHS but it is so disheartening when you feel like you're not listened to or aren't taken seriously.

Ah, that's good then so hopefully won't impact you too much after the procedure. Definitely have some time off though if you think you need it as you need that mental recovery too!

I work in healthcare and have a quite physical job so imagine I'll need a decent amount of time off!

[Moomin45]

I understand the revelation of a diagnosis at last! I received a diagnosis only from the surgery itself so the fear before was a lot to do with the anxiety of whether or not it would be confirmed. The relief I felt upon being told they found it surprised me, but I was so glad the surgery was worth it, and finally knowing my pain was real all this time, after being told “you might just be one of those people who have painful periods for no reason” over 10 years of investigation. I was put forward for surgery a couple of years ago and it finally came around last week and honestly the actual experience was not as bad as the waiting in the lead up. The recovery has been painful but nothing worse than the period pain I had to need the surgery in the first place! The worst thing has been the reduced mobility as it’s hard not to feel restless but I keep thinking short-term pain, long-term gain 🙏

Best of luck with everything from here on, now you know which path you’re on to follow!

[Bramble_B]

Thank you so much!!That's a very good way of looking at it! Adding up all the endo pain, hopefully the recovery pain pales in comparison 🙏🏾 How are you getting on now, post-surgery?

[Moomin45 in reply to Bramble_B]

Only just seen this but I’m doing okay thank you! I’ve been off work for almost a month now as had an extension to the original two weeks given. Hopefully I’ll be back to work later this week or next. My first period has been painful but that was to be expected whilst still healing, and again nothing worse than I’d experienced before. I’ve been able to move far more so have been able to go for longer walks and out to the cinema a few times, and the stitches have all fallen out and the scars are just a pink colour now so my skin looks to be healing well. After feeling at times like your body has let you down, it’s reassuring to see and feel it healing so quickly. I say all that to say, it doesn’t have to be as scary as the idea of having surgery and I definitely think it’s been worth it so if you end up having it I hope it is for you too 🙏

[white61]

I had surgery 2 years ago which was ‘clear’ and showed no endo. Then I had an MRI scan in September 2024 and it showed possible endo in areas. I’ve just had surgery again on the 28th Jan and the surgery was clear again even tho I have all the symptoms. Starting to give up now, was just desperate for an answer for my pain

[Bramble_B in reply to white61]

We can't give up! Just like with any job, sometimes people miss things, or aren't as experienced as they ought to be. But you know your pain and your body, and that means you have it in you to get answers. Keep up the fight!

[Daisy_call]

I had a very similar journey to you and it was the lovely Dr Dewart who diagnosed me a few years ago, after decades of symptoms and getting nowhere with other doctors. I will shortly be having a full hysterectomy and am very nervous, but it’s the right thing to do and I’m optimistic about how it will improve my quality of life.

Good luck with your lap, they’ll take good care of you and it’s so much easier to manage once you have a diagnosis. Remember to take it easy while you’re recovering 😊

[Bramble_B]

Thank you so much!! Very grateful for Dewart and the whole team at Spire. The very best of luck on your hysterectomy - i hope it brings relief!