Advice for newby

[Chelsea012]

Hiya, I had my MRI results back after a week where they said my bowel is attached to my right ovary/ posterior wall and I got free fluid in my right tube and pevic and a chocolate cysts on my left ovary.

I am currently waiting for an letter for an appointment to discuss this in more debt but I have some question for anyone who had experience the surgery plus similar issues.

1) will I need my bowel possibly remove as its causing a lot of issues or will they look to remove my ovary and tube.

2) how long have you roughly waited for the surgery (presuming that's where I am going)

3) I already have a sweet beautiful little girl and we did want more - with all my issues will I likely not have the chance to have anymore (I have had eight miscarriages give before my little girl)

4) also been suffering with pain for over sixteen year and wrongly diagnosed with vulvodynia, would this make me stage 4.

5) does sex get better after surgery as I'm in a lot of pain ..

I'm also getting a lot of pain around my stomach like near my ovaries I am guessing this my new normal? Any advice on how to manage it would be great thanks.

Thank you xx

[KittyTherapy]

Hi,

I might not be able to help with all your questions. But from my understanding, if the endo is superficial they will usually remove that sparing your organs. If its deep infiltrating then that could be a different outcome. Your surgeon will speak to you more about this and your options.

I think typically people are waiting 1+year before laparoscopy on NHS. I think my wait was a year and a bit. There was a priority list in my area and I was deemed moderate at the time. So perhaps if you were high risk then the wait time could be shorter. Would be best to ask your hospital / surgeon where you'll be having the op.

Unsure about the Fertility side of things. My ovaries where spared during surgery. I don't have kids and we aren't ttc.

I think the staging is again correlated to the depth / spread of the disease. E.g. how many nodules, adhesions and cysts are present. However it is important to say that the extent of the disease does not directly correspond to the symptoms. I.e. someone with stage 1 endo can still experience severe pain & other symptoms as someone with stage 4 endo. Sometimes even those with stage 4 can have fewer symptoms than lesser stages.

And whilst I'm not trying to disregard your diagnosis of vulvodynia, I just wanted to say that both vulvodynia & endo can be present at the same time. This is the exact case for me, i was on amitriptyline for many years for vulvodynia. Currently it's settled so am no longer taking meds for it.

Sex is still difficult for me personally. But I think some of it is psychological/ apprehension too.

Symptom relief after surgery can vary. I also had the coil fitted during op and do find this helps my periods. They are not horrendous like before. I still have other symptoms mind you but for me, i felt surgery was helpful.

It might be worth asking your gynaecologist if they would refer you to a BSGE centre (specialist endo centre) - they do have certain criteria which not everyone fits (mine was rejected) however if you are successful then that would be the best place to go for your care as they are a team of specialists.

Hope this helps a little, wishing you the best x