New, looking for advice on what to do. Any help hugely appreciated.

[HighlandRuby]

Hi all,

I’m new here and would love to ask your advice. I’ve been struggling for years with endometriosis symptoms, and after having no help from my own doctors finally went private and had a consultation yesterday.

The consultant agreed that it’s very likely I have endo and has suggested the following.

Prostap injections to see how I cope with menopause. This is because I have a history of depression on hormone treatment and he wants to find out how I would cope before committing to full hysterectomy.

Laparoscopy with ablation and sterilisation to confirm endo and relieve symptoms.

I’m leaning towards the laparoscopy as I would really like a firm diagnosis, and I’d really like to know if it helps. Do periods stop and how long does it help for?

With the injections what are the side effects and has it helped anyone?

I’m 42, have had my family, so fortunately for me fertility is not an issue.

I feel a bit overwhelmed by the choices and a bit scared too in case they don’t find anything! What happens then? I’m due for an ultrasound next week to check for any visible cysts etc.

Any advice or experiences much appreciated.

Thank you

[luthien]

Hi,

It's good that things are moving forward

A diagnostic laparoscopy sounds like a good start; as you said you'd like to see what's there. That will help you decide the next steps.

Have a look into / ask questions / research about endometriosis after the menopause and endometriosis after hysterectomy. Unfortunately as we are mammals we always produce oestrogen (the stuff endo lives off) therefore even during hormone treatment / menopause / hysterectomy / oophorectomy endo can still grow. Basically if you have it there are always cells in your body, which is kind of rubbish.

Most women on hormone treatment will eventually require an operation to remove the endo as hormones just make it hibernate, it won't reverse it and it can still grow. The hormones give us time to think / not ready for what to do next / need to research more / need to come to terms with it all. There are different types of removal; ablation (sanding) this removes some of the endo from the first layers, but leaves deep endo, diathermy (laser, heat) this removes some of the endo from the first few layers and still leaves deep endo, then there's excision (cutting away) this removes all layers of endo and some surrounding healthy tissue. The latter is best but not routinely carried out as the first two are quicker with faster recovery and suited to those whom would then be put on hormone treatment. It's useful to research the differences.

Have a look at the sister site to this; endometriosis-uk.org, there's loads of information on there.

Take some time to look into what you would prefer, don't feel pressured into what the doctor wants. Perhaps ask him / her why they prefer their treatment method. How many women have they treated with that method. Do these women then need alternative / other / additional treatment.

Hormonal treatment is just a delay method, which is really all some women want; surgery may seem scary or not what they want. However hormones can have their own side effects which can sometimes make it all seem a lot worse, for some just taking the edge off the endo symtoms helps them have a more normal life

Surgical treatment is the only method that actually reduces endo and reduces it's recurrence. The recurrence rates and symptom improvements, plus duration of reduced symtoms all vary from woman to women, so it's difficult to say.

I had diagnostic laparoscopy and opted for excision of endo (if any) to be included in the same op; I had endo sticking all my organs together with patches all over. Those were removed and all unstuck. It takes a while to recover from the op. They left a bit on the bowel requiring a bowel surgeon, which makes sense (just had that op), and recovering. I did have hormones for 10 years but didn't know it was endo as I hadn't had the diagnostic lap and doctors wouldn't listen to me. My operation was carried out privately and my consultant was keen to remove the endo as that's his preferred treatment method.

You can choose what you would like from the op, for example you could say you wanted the diagnostic lap with excision (if endo is found), that would then mean you should feel an improvement in symptoms once you've recovered from the op (about 2 to 4 months). Hormones I've heard they can get you to try it for about 9 months before then considering a different treatment - that's a long time if it doesn't work.

An amazing book I found (available on amazon) is "Living Well with Endometriosis: What Your Doctor Doesn't Tell You...That You Need to Know" by Kerry-Ann Morris

Sorry long post, hope some of it helps xx

[HighlandRuby in reply to luthien]

Thanks so much for taking the time to reply. Really helpful information, just struggling to take it all in at the moment! I’m sorry you had such a hard time with your doctor and hope your recovery from your recent op is going well.

I’m going to go ahead for the laparoscopy to see what’s happening and then I hope I can make informed choices about further treatment.

Thanks again. 😊

[luthien in reply to HighlandRuby]

not a problem

yeah I know it's a lot to come to terms with and work through; we're all here to help you through xx

give yourself time to recover from your lap, also it's worth noting if you just have the diagnostic without any endo / cysts etc. removed / unstuck you'll still have all your symptoms after recovery (everything always seems a lot worse during). for me that was my deciding factor to have endo (if any) removed at the same time as the diagnostic lap then at least I knew once I recovered from the op, what I was dealing with; the base level of symptoms, and what to do next.

It seems to be that most doctors are happy to do the diagnostic then will just leave it at that saying you need to leave a good year before they'll look at removing anything they've found so they'll put you on hormones to "help you cope" and "see what happens" as they don't like carrying out the removal of endo lap until they've tried hormones. whereas if a lot more of them could do both ops at the same time (it'll reduce the number of women needing to wait and getting worse. The latter to me makes more sense because if I have as much removed as possible I know what I'm starting with.

Just my thoughts.