Endo help

[Mya_]

Hi all!

I was wondering what has everyone's journey been regarding getting surgery on the NHS?

I feel like I've not really been listened to by doctors and finding out what was going on has been a bit of a battle. I had a scan which seemed to show endometriosis but I was told only laparoscopy can confirm for sure. I have had all the symptoms for years and at some point used to bleed for months on end. I now have the Mirena coil (they told to me after the scan that it was the standard treatment; I literally had two seconds to decide whether I wanted it or not).

I've been suffering with fatigue and pain, and I'm concerned about my fertility given that I'm already 34 (and single, woops). I really want to get a laparascopy but I'm not sure how to push for it and make sure I get it in a reasonable time. I've considered going private but it's SO expensive.

Sorry for the long message.

I'd be grateful to speak to some women who are going through a similar situation.

Thanks!

[Mya_]

Also, anyone else getting sciatica? I thought it was separated but somehow I think it's linked? Thank you!

[Jajo1987]

Hi Mya,

Sorry to hear you are having a rough time with them , I thought I’d reply as I’m in a similar situation, I was diagnosed with endo 7 years ago and I’m still waiting for my first surgery , they unfortunately just don’t take it seriously enough. I’ve had so many pre op’s and nothings ever Come of it ! My bowels and bladder and now fused because of the neglect from them . And still you walk in to the appointment and they act completely oblivious to the pain, I’ve also had this bad experience with them although I don’t think everyone has the same fate with them so there is hope . I think unless people have gone through it they don’t seem to understand. What I will say is I was diagnosed through a CA125 and an MRI so may be worth asking for a CA125 test , what type of scan did you have ? And as far as deciding about the medication I completely agree you have literally two seconds to decide it’s absolutely ridiculous! They need more staff especially people specific to the area. Hope this helps .

[Mya_ in reply to Jajo1987]

Thanks so much for your answer!

I had multiple intravaginal and belly ultrasounds. They saw that my left ovary was not very mobile and saw some other things that seem to indicate endometriosis. Like many other women, I was relieved to hear there might be something as I was made to feel I was crazy... I will ask for a CA125 and an MRI.

I'm only starting to learn about endo, and I can't believe your bowels and bladder are fused and that's something that can happen. I hope you can get the surgery soon, 7 years is a long time!

[Rjb_88]

Keep pushing them to be referred to gynae, a lap is the only way to confirm diagnosis and treat it. They seem to push the mirena but it doesn’t work for everyone and didn’t for me!

For my first two laps I was seen quite quickly and then had my surgeries without much of a wait but for my third lap I was waiting 18 months with no surgery date so I ended up going private (thankfully work changed BUPA so that they accepted historic conditions!). You could always go private for a consultation and if they agree take it to your GP for them to actually refer you to gynae? X

[Mya_ in reply to Rjb_88]

Thank you for your answer!

I live in London and I am always sent to different hospitals so I don't really have a specific gynae following me; I'm not even sure if that's something that could happen.

I'm thinking of getting private health insurance to cover the costs or potential upcoming private consultations. They seem to exclude so much stuff though (mental health, historic conditions); what has your company gone for? Seems like BUPA excludes historic conditions.

I'm glad I've found a community to share experience with as I feel like I keep complaining to people who don't really get it.

X

[Skittles11]

Hi

On the fertility side of things I just wanted to say that it is possible to get fertility investigations done so you know more about where you are at. You may want to do this so you are ahead of the game in terms of understanding your fertility potential for the future. I wish I had had these tests done earlier than I did (I had them done at age 34). X

[Mya_ in reply to Skittles11]

Thanks! Where did you get these done? I assume it's very expensive too.

When I talk about it at NHS appts, they just ask me if I'm trying to get pregnant now and if not, well... no need to investigate.

[Skittles11 in reply to Mya_]

NHS guidelines will say no need to investigate because they have to. But from an individual perspective if you know you want a family in the future there is every need to investigate to give yourself the full picture. You could say to them you are wanting to get pregnant now OR you can get the tests done at a private clinic. You can also get some of the bloods done with companies like Medichecks where you prick your finger at home but to be honest I think the ultrasound scan is also important alongside the blood tests and you would need that done at a clinic. I got them done at a fertility clinic near my home town. If you Google fertility clinics near you you should be able to go to any one of them for that type of initial check and bloodwork

[Mya_ in reply to Skittles11]

Thank you!