Biopsy pathology not endometriosis

[RueBlu3]

It's been 5 months since my laparoscopy, and the surgeon diagnosed me that day because they assumed what they found was deep infiltrating endometriosis inside my bladder.

They removed it all and sent biopsies away for testing. I just received a letter today with word from the pathologists, saying that the biopsies taken from inside my bladder are not endometriosis. My surgeon wants to chat with me about it and I'm on the waiting list for an appointment with urology too.

I'm absolutely gutted, I thought I finally had the answers after so many years. When I was diagnosed, they said they were certain it was endometriosis of the bladder and adenomyosis in my womb. So they are surprised the biopsy didn't show endometriosis.

I've been having bad flare ups but avoiding going to the gp because I assumed it was the "endo" and my new normal... I fear I've been ignoring something else. What did they remove from my bladder!? Feeling anxious.

Has this happened to anyone else?

[Moon_maiden]

Hi

Sorry it wasn’t what you’d expected, answers are always better. Did the letter not say what they found? If not I hope you aren’t waiting long to speak to the consultant. You can request a copy of the histology report from the hospital.

[RueBlu3 in reply to Moon_maiden]

Thank you, I appreciate your response. Nah, they didn't say what it was, just said what it wasn't! They wanted to discuss it at my next appointment which is weird in my opinion haha.

[Moon_maiden in reply to RueBlu3]

Typical stupid response from drs these days 😂 I hope you talk to them soon.

[03jessig]

Sorry you are going through this. Sending love your way x

[RueBlu3 in reply to 03jessig]

Thank you xx

[BoobleDooble]

Interesting. When I had surgery to check for possible cancer which turned out to be endometriosis I don't recall them sending anything off for a biopsy. (I'm in the US not UK). It seems odd to receive biopsy result five months later. And if it was something dangerous, surely they would have contacted you sooner. (?) Wishing you good luck and please let us know what you find out.

[RueBlu3 in reply to BoobleDooble]

Thank you for your reply! Yes, it's very strange to receive it so late. Especially after the scare I had earlier in the year with an abnormal cervical smear. The whole getting my results to getting treatment timeline was very quick for that. So I'm hoping that means this time around it's nothing to be stressed about because surely they'd have reached out asap? Thank you so much, I'll try to keep you all updated x

[Goiaba]

Hello! So sorry you didn’t get the answers you were expecting. Not knowing is definitely the worst!

You can ask for your records to understand in depth what went on, I guess with waiting times the way they are now you could get this before the appointment. Think that although it wasn’t endo and they didn’t say what it was, at least it’s been removed!

You did mention though that they’ve confirmed you have adenomyosis, which would explain your flare ups. Adeno is often overlooked and underestimated but it can be quite damaging too, it just doesn’t spread as it is inside the womb. It doesn’t need an op to be diagnosed like endo, an MRI or even ultrasound would do depending on the stage and type of adeno. I lived with it for years until my dr realised my adeno was equally bad (or even worse) than my endo, so please don’t accept a ‘deal with it’ for an answer.

In fact, for any endo/adeno ladies here, do never ever accept pain as normal until you have exhausted all the options available! Living with pain is not normal and there are ways to cope better if, by any chance, you have chronic pain.

I hope you find your answers soon and that they can give you some peace of mind 💕

[Tulip1983 in reply to Goiaba]

Hi, Goiaba. I've also got adeno as well as endo. I've been put on the waiting list for a full hysterectomy but don't really want to go down that route at the moment. Are there alternative treatments for adeno?

[Goiaba in reply to Tulip1983]

Hi! The hysterectomy is not the only treatment but unfortunately it is the only cure to adeno.

I have also been offered the mirena coil and although it didn’t work well for me, I know people that had great results with that (as in thinning the womb and conceiving after removing the coil). I guess it depends on what your main goal is. The only treatment that gave me my quality of life back was the prostap injections and a full hysterectomy, including ovaries. For reference, I am 30 and have no kids.

I’m a big advocate of an endo friendly diet (it will work for adeno because they are both inflammatory conditions) and cutting off gluten really helped me.

I’m 3 months post op and have been the healthiest and happiest in 12 years! Xx

[RueBlu3 in reply to Goiaba]

Thank you for your advice, I appreciate it 💖 Yes I've been trying to look at it that way myself, whatever it was is gone! That's the only thing keeping me sane right now haha.

I'll see if I can get my records, they always say a different story to what I get told. I'm sorry you had to deal with adeno too, I'm still trying to understand it all. I guess because I know it can't leave my womb, I was confused as to what it is they removed from my bladder 🤣 but again, at least it's gone!

How do you find the willpower to keep advocating for yourself? Sometimes I just sigh and let them continue telling me I'm overreacting because it's too tiring to keep saying the same things over and over again to these doctors!

[Goiaba in reply to RueBlu3]

Well it is easier said than done haha

Counselling changed and saved my life during a very dark period with my endo in the last 11 months so I credit my therapist!!

I understood I had to learn how to live with my endo instead of fighting against it because the way it grows in me, it is not going anywhere any time soon! It does help that my last surgery improved my quality of life in a way I never expected it to - I am better now than I was when I was 17 years old, so that says a lot!

My mum also have endo, I saw all she went through during her journey and I just could not let these people do the same to me.

I’m just fed up of under qualified doctors having an opinion on a disease they know nothing about and thinking they know what I feel better than myself.

I guess my current consultant was very conscious of that, and treated me as an equal explaining everything to the detail with words I can actually relate to and this gave me so much validation! I wasn’t crazy, I wasn’t being dramatic or difficult or depressed, my pelvic organs were simply fused together in a blob of disease that just kept growing 🤷🏻‍♀️ wish I could go back to the dr who sent me to the pain clinic and say that no anti depressant would fix that.

I hope you and all of us can find strength to fight for ourselves, because if we don’t nobody will 💕

[RueBlu3 in reply to Goiaba]

Thank you for your advice 💗 it's a long road to be on

[Kieraface]

my surgeon removed a large endometrial mass. All the characteristics of endometriosis and still to this day says it’s endometriosis but the pathology said it wasn’t endometriosis. He said there is a strong chance that during the removal they destroyed the endometriosis cells as they could have been cut with the laser etc. if your surgeon thinks it’s endo I’d go with the surgeon. My surgeon has confirmed endo and adenomyosis and also polyps now! Woohoo 😅 just wait and see what happens but if you are concerned maybe go see your gp in the interim xx

[RueBlu3 in reply to Kieraface]

Ooo thank you, it's very interesting that happened to your biopsy so I guess I'll just have to sit tight and wait to see what the specialists say at my appointments. I still believe my surgeon and for the past 5 months I thought his diagnosis was final haha. If I hadn't received that letter if probably still be blissfully unaware so it's a bit weird having that all be thrown up in the air again.

Glad you finally got a solid answer, gives me hope! Such a sad thing to celebrate about but honestly it's so good to know what's wrong isn't it? 🤣 xx

[Kieraface in reply to RueBlu3]

Well sadly I still have a lot of pain and constant bleeding. Haven’t stopped bleeding since 6th October - specialist has no idea what is causing the bleeding now so we are stopping all contraception and hormone treatment and going back to natural cycles to see if that helps. Definitely great knowing half the problem just annoying they haven’t fixed it all. Sadly surgery doesn’t always fix things, sometimes it just takes some of the issue away. I hope you get a more final resolution soon xx

[RueBlu3 in reply to Kieraface]

You too, sounds like there's a wee while to go with getting a solution for you! xx

[Kieraface in reply to RueBlu3]

Aye, definitely gonna be a wee while yet almost 12 weeks bleeding now. Not sure I can take much more. I had about 18hrs in total with no bleed but it the came back with a vengeance xx