Post laparoscopy and still in pain.

[pinkbambi456]

Hi. I had a laparoscopy (my 3rd one) for endo 6 weeks ago and still in the same pain as before if not worse. I am unable to go to work or do anything really. Previous laparoscopies worked and was pain free.

I saw my gynae consultant last week and he said there may be residual endo left. He wants to put me on zoladex injections with add back hrt for 6 months but am reluctant to do this. Does anyone have any previous experience of this or any advice.? I'm 34 and ultimately want children. I'm worried that being put into the menopause state that 1. The side effects are going to be horrific and 2. I won't be able to get out of the state I've been put in. Any advice is appreciated. Apologies for the lengthy post.

[ccorti]

I would say (a) after 6 weeks you are still recovering and perhaps its still a bit too early to know if you are still the same, especially if deep excision was involved. (b) Is the gynae you saw last week same as the one who operated on you? If so, is he a BSGE specialist? I find it unacceptable to say after 6 weeks from a laparoscopy that there is residual endo left. Why was it left? (c) I am currently on month 1 of decapeptyl which like zoladex is a GnRH agonist. I have bad days, but I also have good days and I am expecting more good days once my body gets used to them in the coming months. I was put on them to shrink my endo somewhat to make the next excision surgery less invasive and so I'm saying to myself that the side effects are worth it. You do need to be aware though, that once you come off them you may not ovulate for some time, so if you want to conceive straight after the 6 months, be aware that it may not happen straight away but it will eventually. I think you also need to be aware though, that these injections won't make endo disappear, there is some evidence to suggest it shrinks it, but if there is no further excision planned I'm not sue this is a long-term solution anyways. I hope this helps a tiny bit x

[pinkbambi456 in reply to ccorti]

Hi thank you for replying.

Yes it was the same consultant I saw last week that done the surgery. I don't think he's a bsge specialist but he actually trains key hole surgery and is an IVF doctor too. How do I see a BsGe specialist ? Can I be referred on the nhs?

He hasn't said that it's definitely endo left there but because I'm in so much pain still this is a possibility. There have been no suggestions of anything else apart from these injections. I've been to my doctors to ask to be referred for a 2nd opinion and was told that there's no point basically. I've been told by someone who has a lot of experience and is very knowledgeable so who am I to argue.

Thankyou for your help. I really don't want to have these injections at all but just feel that I am backed into a corner. I am trying acupuncture at the moment to see if this alleviates the pain but no luck as yet.

Do you know of any other remedy that I could try before going down the injections route?

Thanks again for replying xxx

[ccorti in reply to pinkbambi456]

Your GP can refer you to a BSGE specialist near you, and yes it is done entirely through the NHS. You can find your closest one here: bsge.org.uk/centre/. My first lap was done by a specialist in key hole surgery. He still left a lot of endo there as he was not experienced in seeing endometriosis on other organs. Fortunately, he referred me himself to a BSGE surgeon who I have a lot more faith in. You definitely have a right to a second opinion, so don't let your GP discourage you from doing this. (They will discourage you from doing this more as a funding issue, your health is much more important than that).

I felt like I didn't have much of a choice on these injections either, but agreed to be on them as they will be followed by thorough excision of my endo. I would have been more hesitant to go on them if there was no plan after, which I suppose is your situation. Having said that if you show willing and do not refuse treatment, you are then more likely to be referred to a BSGE specialist if the injections do not work - so that is another thing to consider.

A lot of ladies report alleviation of symptoms by following the endo diet. I found that taking out caffeine, alcohol and red meat from my diet meant my bowel symptoms have ease off a little. If you are strong willed (not like me, haha) you can try cutting out sugar, gluten and dairy as well as these have also been found to potentially alleviate symptoms. I must say though, that NHS dieticians do not believe in this endo diet at all and therefore they do not support it - I know as I was under dietetics for excessive weight loss and they do not like the fact that you take out all of this out of your diet.

I hope this has helped somewhat,

Best,

Cat x