My follow up appointment in January has left my a little confused and worried. I had my Lap in October 2019 and was diagnosed with endometriosis.
My consultant also said to me that I have a very enlarged Womb but it’s nothing to be concerned about at this stage😕
Does anyone no what this mean please?🤔
It could be a sign of adenomyosis, which is where cells like endo grow inside the muscles of the womb.
It's something that should be investigated and not just left as it could be a cause of pain.
Thank you so much for your reply Christina.
I don’t believe my Lap I had in October has helped because I am still in pain most days.
I do think there is something else wrong with my body but I just keep putting up a front and pushing past it.
I was told when I had my first miscarriage that I had a tilted womb🤔 I seen my womb on the picture in January and it does look very enlarged😖
I don’t no where to go from here. I scared to say I think there is something else wrong in case people say stop been daft your fine it’s probably just your endometriosis🥺
You say you've had your lap to diagnose your endo, did you have any excised? Any other method of removal such as ablation / diathermy / laser?
Did an endo specialist perform your lap? Where was the endo they found? How much did they remove?
Sorry for all the questions, but it does help to know! In answer to your's; an enlarged womb can be due to cysts, adenomyosis, fibroids, so ideally needs more investigation.
I’m not sure where my discharge letter is but my letter to my GP says, stage ll endometriosis from bilateral ulerosacal ligament plus pouch of Douglas endometriosis plus tubal dye test plus cystoscopy plus perioperative ureteric stents.
I think the endo was found my uterus and rectum🤔
I’m not 100% sure and I think she was an endo specialist. I didn’t get told I was just passed to her after my MRI
That sounds like similar places I had my endo.
It doesn't sound like you've had any endo removed though... so your symptoms will not get better. It sounds like it was a diagnostic lap so the idea is to find out the extent of your endo, usually that's standard with the NHS unless we push for excision at the same time.
You should have a follow up at some point usually about 2 months to discuss findings and next steps. May I suggest you have a read of the NICE guidelines for endometriosis so you can compare where you are on your treatment path to what the doctors should be following. That then means you know what to do next / push for.
Ideally you need excision of your endo with an endo specialist and possibly a colorectal (bowel) specialist for the excision of endo on your rectum - this is what I needed.
If you find your notes / obtain them from your GP post them on here and we'll help with what you could do next. You should be able to find your specialists name on there too, a quick google will tell you their specialisms.
Sorry I'm now going off at a tangent to your question!
Thank you so much for your response.
I’ve had my follow up in January and she told me what they had found but I’m not sure if she said she had removed it. She said she has cleaned my tubes out so between now and 8 months is the best time to try and complete my family but we are not ready yet,
She then said that she is discharging me and will send a letter to my GP🤔
So is that it now, I don’t understand why I’m still in pain?🥺
One step at a time; the best thing to check is whether you've had any endo removed. That should be on your letter. If it doesn't mention any description of removed (may need to google words used) then you've not had anything done.
Tubes cleaned just removes any odd tissue in the fallopian tubes, yes it can help with conception as the egg may actually reach the uterus, but there shoudn't be so much pressure on us to actually go through that. So you're right to say you're not ready, and that's fine, go with that.
Usually a general gynae will suggest "family" and then discharge you as that's their suggested form of treatment. Specialists usually want to stick with you and follow up for a while.
Deffo find that letter!!
There are steps you can take to have further treatment / investigation including your enlarged uterus.
She was called doctor p khatri at james cook university hospital.
It does say that she is specialised with endometriosis🤔
I don’t understand why they wouldn’t remove anything and just diagnose and then discharge me because she new the chronic pain I was in and it’s becoming that way again.
Maybe the endo has returned??
Thing is my specialist said it is possible it can go worse after surgery you just don’t know
You don’t sound like you’ve had any treatment that’s not good is it a retroverted uterus as lots of people with endo have that!as op says it needs more investigation you will have to be referred again this time be very specific about what you want I’ve kinda made that mistake kind of not some gynaecologist don’t listen and do as they please I asked for a lap with a specialist and they put me with anyone I cancelled that lap as I wanted a specialist eyes to diagnose me not someone with no experience people will argue you can’t be seen but it’s really down to your g.p and you pushing to be seen by the right people
Thank you for all your replies.
The only thing it says on my discharge letter is lap excision for stage ll endometriosis from bilateral ulerosacal ligament plus pouch of Douglas endometriosis plus tubal dye test plus cystoscopy plus perioperative ureteric stents.
I really confused as to if I have been treated or just diagnosed🤔🥺
It sounds as though you may have been is there anyway you can post it here or p.m one of us
Excision means you been treated
I think I might have been treated and I think that it’s grown back or something else is wrong because of these pains.
It’s probably grown back some people only get 6 month relief
Thank you so so much for all your help😊
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