Treatment?

[Humptydumptyegg]

I had my first hospital apt today. I left feeling quite confused. She did an internal exam but other than saying ‘I was not expecting that’ didn’t give much away!?. The Dr offered me the coil, mini pill or a laparoscopy. But said it was all my decision. I’m not keen on hormonal treatment due to bad experiences on the pill in my 20s but having never tried the mini-pill I agreed. I have a months prescription to begin with. I don’t know what happens then? Another apt maybe? It wasn’t clear.

My concern is that I think my source of pain may mainly be concerned with the lack of movement of my ovaries. She referred to this as this was flagged in my US but still said that hormonal treatment could help with the pain. She offered a laparoscopy but said it may show nothing and hormonal treatment could be just as affective. I’m in agony just after the internal. I feel exhausted by all this.

What are your thoughts? I’ve opted to try the mini pill, I’m feeling quite desperate so at this stage feel I need to try something to make life more manageable despite my concerns about previous issues. I’ve also opted for the laparoscopy, I figured I could always change my mind if the mini pill is working and the pain disappears but as the waiting list is no doubt very long, it’s worth getting on it. Is this a good idea?

I felt it was all up to me and I have no one I can discuss this with, so would really appreciate any insight?

[Christin_a]

Hello

It's a bit overwhelming isn't it? I recommend going ahead with the lap even if the pill helps your pain if it's endo all its doing is masking the symptoms not treating the cause. Where as if you have the lap you can get a confirmed diagnosis of what's going on, which can help you wrap your head around what's going on in your body. Also they can remove any endometriosis if it's found which can alleviate your symptoms.

If you are in the UK you must be treated by a gynecologist who has a specialist interest in endometriosis. And if you are found to have/suspected of having it on your bladder/bowel. Then you must be seen by a bsge centre gynecologist (they have a website so you can if your surgeon is).

It's actually great that they gave you options and have let you decide sometimes women feel pressurised into trying something just because it's the only option the Dr has given. So being given options and your say is a good sign.

[Humptydumptyegg in reply to Christin_a]

Thank you, I really appreciate your reply. I’m glad you think I’ve done the right thing, I’m feeling a bit out of my depth. Choice is great as you said and my Dr was lovely and very sympathetic, I was feeling overwhelmed by the choices.

Apparently my LAP could be done by one of 5, all highly experienced but only one BSGE and only 2 other specialists. So presumably the others are general gyny? You go on a pool apparently so I’m not sure it’s possible to ensure my LAP is done by a specialist.

How quickly does the mini pill take to work?

[Christin_a in reply to Humptydumptyegg]

As to going into the pool with all the gynecologists, they should ensure that only those with a specialist interest (there's a difference between being a specialist and having a specialist interest in endo) do your surgery. It's a requirement of diagnosising endo within the UK, you could when they give you a date ask who the surgeon will be and I recommend only accepting one that has a specialist interest.

The reason being is endo can present in many ways and those without extra training/interest are unlikely to recognise all the ways it can present. So they can miss it and say you don't have endo when you do they just didn't have the knowledge to recognise it.

Which hospital are you under?

[Humptydumptyegg in reply to Christin_a]

It’s Derriford in Plymouth?

[Christin_a in reply to Humptydumptyegg]

Okay it looks like they have a section about each consultant that works for them so check out what their interests are. So I suggest checking the out and seeing who lists endo as a specialism or interest

[StefaniaJW]

Yes, hormonal treatment can help with the pain, but adhesions and endometriotic lesions won't disappear.

The best piece of advice I can give you is to go to a appointment and book a laparoscopy with one of the most skilled and experienced endometriosis excision surgeons working in the UK. I have a list of these surgeons, working within the NHS and privately and I can give it to you. Excision surgery is the gold standard for endometriosis. Do not let anyone perform ablation surgery on you.

I can guarantee you a very well-performed excision surgery will turn your life around.

The mini pill does work with suppressing the symptoms in most people, but whether it'd be a good fit for you or not I cannot say. I suggest you try if you feel like it, but don't expect it to make miracles.

Personally, I have noticed how lifestyle and dietary changes can be very very effective.

I eat plenty of freshly caught fish, veggies, some fruit and nuts, pasture-raised eggs, some wholegrains, grass-fed meat once a week. Absolutely no processed, fried or industrial foods, refined carbs (bread, pasta, pizza, breadsticks, biscuits), cured meats, soy, dairy, industrial meat, desserts of any kind, alcohol and not even coffee.

I drink water, matcha green tea, homemade veggie and protein-based smoothies, sometimes water-based kefir or herbal teas. I only use extra virgin olive oil, lemon juice, lime juice, salt, pepper, turmeric, parsley as herbs and dressings.

Please have your vitamin D levels checked out (your GP can prescribe the blood work).

I always sleep 10-11 hours per night + walk everyday outdoors (for 30-40 minutes).

I also get a tui-na massage or myofascial release massage every month before my period.