Endometriosis

[Fairytale21]

Hi, I’m new on this but I have recently got a diagnosis of endometriosis and I feel like for my own mental health I need to be in contact and see others talk about this illness and just to know I’m not on my own 😊

[Moon_maiden]

As you’ll see, definitely not on your own 😊

What sort of diagnosis have you had?

[Fairytale21 in reply to Moon_maiden]

No definitely not, I had my surgery in February of this year, when I woke I was given 3 rounds of morphine because I woke up in agony so my memory isn’t the clearest of a lot of that day however I was told that the endometriosis was basically covering my womb, part of my Fallopian tubes, most of my bladder and part of my bowel and I was given the marina coil

[Moon_maiden in reply to Fairytale21]

How are you feeling now, pain wise? Did they remove the endo? It’s quite extensive by the sounds of it

[Fairytale21 in reply to Moon_maiden]

I was bleeding for about 2 weeks after but I haven’t had a period since it so I would say that’s been brilliant but I still find it painful when it comes to sex and sometime with bowel movements and I am cramping a lot of the time especially after sex but yes, my surgery was only meant to be a look to see what’s going on but they done removal that day aswell however they didn’t take it all as I was told it would cause more harm than good

[Moon_maiden in reply to Fairytale21]

It’s good they did something at the time and a bit easier.

You’ve been through the mill a bit. I was told ultrasound doesn’t show endo, MRI may if it’s deep.

I ended up private last December, seems a common practice here. Lap in Feb as well, now on Zoladex.

Have you had a follow up to lap, or is that later down the line?

[Fairytale21 in reply to Moon_maiden]

Yeah ultrasounds don’t show it, it can only be diagnosed through either laparoscopic surgery or if it’s deep MRI. Me and you both went private in my opinion best thing I ever did.

You have been through the mill, zoladex is a strong drug.

I was meant to have a follow up this month but with everything going on it was cancelled.

[Moon_maiden in reply to Fairytale21]

Totally agree re going private, I could have had op on NHS, but sold bits instead. Best decision and so vindicated. It also means I can push a bit more with GP.

I hope your wait isn’t too long for the follow up. I’m surprised it was cancelled and not even as a telephone call, even just to check if ok.

[Fairytale21 in reply to Moon_maiden]

Yeah private was the best thing i have ever done, I do get not everyone can afford it though and there is people having to wait on the NHS, I was told I’d be waiting 3 years for a consultation if I’d went on the waiting list that’s what made me choose private but my heart goes out to those who have to wait so many years!

I got a letter to just say it was cancelled and I would get another letter for another date.

[Marcia71 in reply to Moon_maiden]

Private was worst mistake for me as an unqualified surgeon tried to treat my severe endo and deep infiltrating endo. With the type of endo you have - on bowel - it is classed as severe and you must be seen in a bsge centre. These are tertiary care specialist endo centres. Your gynae should have referred you as soon as saw it on your bowel.

It would be best to have an mri and internal ultrasound as both can diagnose deep infiltrating endo and give surgeons a treatment plan before operating again. Endo shouldn’t be left as it will just keep growing. It sounds like your surgeon at least stopped as he knew wasn’t qualified to treat.

There are BSGE centres that are private but most are on NhS. You can always pay to see one of the surgeons at one to get you started but your gp can refer you via nhs England now you have the diagnosis of endo on the bowel.

[Moon_maiden in reply to Marcia71]

Hi, did you manage to get yours treated? Any complications?

[Marcia71 in reply to Moon_maiden]

I had 3 ops with general gynae before I knew about BSGE centres and then got referred to one and had two further excision surgeries to treat it all. Finally 5 years later I’m much better and out of pain. I had severe rectovaginal endo and whilst there was a risk of having to have a vowel resection I was lucky and it was treated ok and just endo removed. I’m at Guys BSGE centre.

[Moon_maiden in reply to Marcia71]

Many thanks, quite a few surgeries to go through. I’m glad you’ got it sorted and feeling better. Lucky the bowel was ok as well.

I don’t know the extent yet, I’m tempted to get MRI sooner to know if it’s that or something else at the moment. I’m sure I’ll be in touch with GP yet again next week.