Still in shock just home from hspt, been referred to MDT they are suggesting that my choices are full hysterectomy or excision surgery and the mirina.
I'm 46 so guess menopause is near but hadn't noticed any symptoms but a surgical menopause seems abrupt. Do people go straight on HRT or do you wait and see what happens?
Sorry long message, not sure where to start research.
Have to be careful with HRT as oestrogen feeds endo. Full hysterectomy 9with removal of ovaries) gives you much more chance of it not coming back. I would have thought they would suggest excision and hysterectomy. I had excision and not hysterectomy at 47 and now it has really spread again badly, I'm 50. Wish I had gone for full hysterectomy, they can't do that now as everything so stuck together they can't get womb out. But maybe hysterectomy has lots of difficulties I don't know as didn't have that. See what people say on here...
Thanks for sharing your experience.
Are you being treated or referred to a specialist endo centre, as this is where you should be treated?
Be aware that menopause doesn't always resolve endo, especially when severe such as you have, as it isn't driven by the ovaries. By the same reasoning removing your ovaries isn't guaranteed to either. The recommended HRT would be continuous combined. I only developed endo, which was severe, at the age of 51 which was 7 years after a total hysterectomy/oophorectomy and being put on oestrogen only HRT.
Excision for severe endo is complex with risks and essentially is done for pain. So this is a balancing exercise between your quality of life now versus the potential risks of surgery. So option 1 is do nothing, with a caveat that a scan doesn't show any dangerous infiltration of vital structures/organs. On the group I run we have several who are monitoring severe endo with scans rather than having excision. Deep endo can reach a stage of non-progression. The exception is the endometrioma (it will usually but not always be the left involved) and it is recommended that these are excised prior to menopause as there can be a risk of malignancy.
If pain is unmanageable then the decision will usually then be more in favour of excision, with preservation of the reproductive organs where possible. Hysterectomy and/or oophorectomy is only recommended if the uterus itself is diseased such as with adenomyosis (endo in the uterine muscle), if menstrual symptoms are unmanageable, if the ovaries are too diseased to salvage, or if excision is going to be safer if the uterus and ovaries are excised out as well.
Sorry, I know this is a lot to take in but it is always best to know what you are dealing with. It is all so personal to the individual. Feel free to DM if you need any more help. x
Source (full) ESHRE guideline:
eshre.eu/Guidelines-and-Leg...
Thank you for that information. I have endometrioma on one ovary that is 8cm and the other ovary has a fibroma so at the least those will be removed. As for the who I'm being referred to I have no clue, they just said wait for a letter.
I'm under the impression that they can't get to the endometriosis without removing my uterus, I could be totally wrong I was not expecting that. I knew I had the cyst from us before Xmas and was in pain from it, all the rest was unexpected and found on MRI.
When I read your post my first thought was wow, this is a lot compared to what I am going for, even though I was offered all options too. I am 51 and Endo was found last year, out of no were I had a flare ended in A&E where they found plenty of fibroids, 2 Endometriomas, one in each ovary, 6&4 cm. I had an MRI which come back with stage 4 and DIE Endo. I have been in some way “asymtomatic” because I had pain in my legs and back for the last 30 years, for wich the reason was unknown, was diagnosed with Fibromialgia, due to all my body aching and tiredness, had never had killer cramps (till late last year), but yes painful periods that I could manage with painkillers. My period at this age is as regular as always, more amount because the fibroids, but not as much as I heard my mum & sister to talk about, which ended with full hysterectomy at 47 & 42. So, I could never have thought that I had any issue down there…. While the monster was growing without control..
Anyway, I am having laparoscopy next Friday, 3rd of March, my right ovary will be removed, the left cyst will be drained and will try to save the ovary, will also remove the two tubes and will have the mierena inserted. The consultant wanted to do an ablation too, but I opted for not having it because I read so many going wrong and ending in hysterectomy, and the only reason he gave me was amount of period, and I will have the coil anyway!
The consultant said that Hysterectomy is not needed, he won’t be doing any excision either I think. He said that he is pretty sure the leg pain is due to the cysts and thinks that with menopause around the corner, it will stop growing/dry out, let’s cross the fingers! Then… if later on I continue having problems we can do something else, but may not be needed, this is why he doesn’t want to do it all, also, it brings other problems, and if not needed is not point. Took a while for me to understand that I may not be fixed all at once… but it is what it is…
If I was you I would discuss further with the consultant what he recommends and why so you are happy with your choice.
Sorry for the long post 
Thank you so much for replying. This is really helpful to hear.
I'm facing a a mine field of information by googling, so to hear from real people with similar stories is better for me.
I know the pain is from the ovary so I wonder if they would just take that out and leave me with one to go through menopause naturally.
Hysterectomy and removal of ovaries is a brutal operation. There is a site 'hormonesmatter dot com' that goes into this. Endometriosis can still come back even after full hysterectomy etc. Its best to make a fully informed choice in your own time, because once you lose your organs they cannot go back.I manage mine with Sulforaphane and DIM supplement, with bioidentical progesterone cream during my ovulation cycle. I have an endometrioma which has shrunk from 9cm to 6.5cm. I read some study where they blocked the harmful estrogen and gave progesterone and it improved the cysts.
But you have to eliminate as best you can other harmful estrogens. The sulphoraphane and DIM block/metabolise the harmful estrogens but not the needed estrogen.
Even though I have a small solid mass on cyst now, I am not rushing in to get surgery but am weighing it all up, and finding other treatments for potential CA because for me, I have tasted what loss of ovary would be like as it is slightly impaired right now.
You and other women in your situation are in my prayers ...best of luck x
Than you for the information
Whatever you do not take notice of Hormones Matter. That website is widely known to be a hotbed of scaremongering that has caused a lot of psychological harm to women.
Thanks for the warning. I'm quite a critical reader so quickly established which information was helpful and which was not, but I really appreciate you looking out for me.
MRI results 
Mri results - what next?
MRI Results
Does endo show up on MRI?
