What next?

[Cherrycat32]

I posted in January regarding my results from internal and external scan in Dec. I was informed at the scan I have 3 fibroids and a chocolate cyst on my right ovary at 3.9 cm. I'm 51 and had been on hrt for just over a year but had stopped in November 23 as had heavy bleeding and multiple uti's. I had various symptoms for a many years such as ibs, bowel problems, constipation, tiredness which had worsened in past few years which was all put down to possible peri menapause, only ever given sachets to help with bowels. I was told at scan I'd have referral to gyno but in January the Dr phoned saying he had received an advice letter from the hospital, he asked whether I was still heavy bleeding (no, since stopping hrt) and wether I had been diagnosed with endometriosis (again no). So then informed me they wouldn't need to see me in clinic but I'll have another scan in March.So I have tried to change diet to help relieve symptoms but I am left feeling confused regarding my diagnosis? No one has said I have endometriosis ? Will they look at this to diagnosed? Could this be related to bowel problems I've had for years? Will this be explored? Not sure where I go from here?

Thanks for reading, any advice appreciated.

[Lindle]

An endometrioma is a confirmed endo diagnosis. They are very often associated with deep rectovaginal endo and you need an advanced scan to look for it.

What sort of HRT were you on?

[Cherrycat32 in reply to Lindle]

Hi thanks for your reply. I started on tablets but then changed to everol patches. Due to having side effects. The patches seemed OK to begin with but then lots of uti's and bleeding. I'm on nothing now.

[Lindle in reply to Cherrycat32]

It’s as well you’ve stopped as oestrogen only HRT is associated with endo progression. Interesting I was only diagnosed for the first time at 51 after a hysterectomy and both ovaries removed years before. I grew a huge aggressive mass under oestrogen only HRT.

Just monitoring this and doing nothing isn’t an option you should accept if they go down that road. Endometriomas are associated with potential malignancy after menopause so are best out. However, endometriomas are also often, and some surgeons will say usually, associated with what is called rectovaginal vaginal endo which is classed as severe . You have the typical scenario for this - years of problems just put down to other causes when it is often deep disease slowly growing over time. Typical symptoms are lower back pain, leg pain usually but not always left sided, pain with sex and bowel problems.

The best way for you to cut through all of this would be to get a private expert scan to determine if you do have deep disease elsewhere which would then qualify you for referral to an endo centre. Where in the UK are you and would this be an option - probably around £400?

[Sunset-lady in reply to Lindle]

Morning, can I ask about doses of estrogen and progesterone. I'm on 2 pumps of estrogen gel and one 100 mg utrogestan daily. Is that enough progesterone to counteract the estrogen if you have endometriosis in your opinion?

[Lindle in reply to Sunset-lady]

That is a fairly standard dose but there’s no way of knowing what is right for any individual as absorption and metabolism will vary. HRT is given based on the ‘threshold theory’ which aims to supply enough to give benefits for symptoms and bones whilst not enough to stimulate endo. But it’s a very inexact science. The severity of endo will be relevant - the more severe the endo the more likely the chance of recurrence but everyone’s endo is different.

[Cherrycat32]

In Hampshire. Yes possibly an option to go private for initial consultation. The Dr seem to imply that another scan in March as the cyst might have gone as it maybe hormone dependant? Is this possible with chocolate cyst. Also wouldn't help me regarding knowing the extent of endometriosis.

[Sunset-lady]

Can I ask how you found stopping the HRT? I am very similar to you but I have stage 4 endometriosis diagnosed when they tried to do a hysterectomy but couldn't as it's fused together now. I was diagnosed with IBS for years. I'm now on zoladex to shut ovaries down. I've been bleeding heavily for 19 months and I've just stopped. I have an endometrioma on my left ovary too. I'm hoping fibroids will shrink on zoladex. If I stop HRT I'm a mess.

[Cherrycat32 in reply to Sunset-lady]

Hiya itsbeen 2 and 1/2 months since I stopped. My periods have gone back to lasting about a week and so far no hot sweats at night. Getting joint pain in hands in morning. It's difficult to say regarding mentally as I'm more tired than normal, have had bouts of lower back pain the sort when you're coming down with a virus and my libido is non existent so not sure if due to endo symptoms or peri menapause.

[1Poppy1234]

Your Dr should be able to refer you for an internal ultrasound that's how I found out I had it but they weren't looking for it at the time. I find I'm loads worse with oestrogen. It's so hard to get any help isn't it.

[Cherrycat32 in reply to 1Poppy1234]

Hi, yes I have been told I will have another scan in March but I think they are just seeing if the cyst has shrunk, they don't seem concerned about the fibroids. What I find difficult is the total lack of communication, there seems to be nothing in place to have a discussion after the first scan where you are told what was found so no-one to answer any questions. I still havnt been told I have endometriosis even though the presence of cyst suggests I do and to what extent. Feel very much left in the dark and it seems its totally up to you to research and push for things. But being new to this there is so much info to take in.

[Barleyboo123]

I’m guessing they haven’t said you have endo. My theory is that they were more concerned about your bleeding which suggests they might have wanted to explore the big c. Maybe womb or ovary. Now they’ve seen you’re internal scan the heat is off as it doesn’t show anything so not so urgent.

[Cherrycat32 in reply to Barleyboo123]

Maybe, they can't tell a cyst isn't cancerous without biopsy I thought and no mention of that. Its more knowing I have endometriosis which explains so many symptoms I've had for years I want to know to what extent I have it and whether I have any options to help my body.i will question this at my next scan and see what response I get and go from there. It seems my only option might be to get private scan from specialist.

[Cocoacupid]

hun I was like you over the last few years bowels symptoms got worse even with the coil fitted am having further surgery this year to have some of my bowel cut away and then rejoined . Endo is awful what ever your age. I’m 38 next week and was only diagnosed with endo last April . I have possible autism and also fibromyalgia as well. Endo is so so painful as well my pelvic organs are frozen together with fibrous tissue so yes if your endo is bad that could be the case for yourself . Maybe ask for an mri as that will show deep infiltrated endo and show nerves and tissue and the organs involved. Xxx

[Cherrycat32]

Thanks for your reply, it sounds like you're dealing with a lot. Yes I'm hoping to ask more questions at my next scan and make sure I get them to note my symptoms in the report then hopefully I can push for further investigation. Xx