Newly diagnosed

[Anna1music]

Hi, I've just come out of hospital after having 2 cysts removed(one from each ovary) and what I was told was severe endometriosis. I'm sore and quite drousy with it, the drs have said I will have to have 4 weekly injections and daily tablets. Can anyone enlighten me on what this means whether its to help the endometriosis not come back? Any advice is greatly appreciated as I didn't know I had this when I had my op and they thought I only had one cyst. It doesn't help I also have fibromyalgia so the pain has been ignored by the doctors as fibro and not anything else.

[Christin_a]

Hello Anna

1st off sorry to hear you found out through surgery that wasn't too diagnosis this condition as is the case of most of us here so we go in with some knowledge.

2nd some info about endo and treatment options they have suggested. During the surgery so you know if they removed any of the endometriosis other than the 2 cysts?

Is your gynecologist a specialist in endometriosis (a quick Google can usually tell you this) ? As in the UK if you have severe endo only specialist should handle your case, BSGE has a list of endo specialist that work in conjunction with other disciplines such as specialist nurses, pain consultants etc. And if in the UK you should push to be seen at one of these centres.

As to the injections they have suggested this is completely up to you on if you have it. To me it sounds like an injection to put you into medically induced menopause, with the daily tablets likely being HRT. This is something I recommend you research into to decide of this is something you want, as this has alot of possible side effects.

Any hormonal therapys such as this or the contraceptive pill are offered on the basis that usually they help to slow down the growth of endometriosis. But as you have severe endo and if it wasn't removed during your op then you need to push for this to happen as otherwise they aren't dealing with the route cause, just making symptoms . Unfortunately endo can regrow even after it has been surgically removed, as microscopic endo is not seen so left in situ.

[Anna1music in reply to Christin_a]

Hi Christin, thanks for your response. They have removed the endometriosis I vaguely remember them saying everything was stuck together but this might have been the effects of the morphine. I don't know if my consultant is a specialist in endometriosis il look into it. I'm hoping I find out a bit more of what happened when I see the dr next week as all I got told was that I have had the 2 cysts removed and that I have had alot of work done. With the removal of endometriosis. It's so confusing..

[Christin_a in reply to Anna1music]

No worries, we're all here to help.

Okay yes that's good that you have a follow up so quickly.

So before that meeting I'd recommend having a look into the menopause injections as some people can feel like they have to do it because it's suggested but if you don't want them you are well within your rights to say no and ask for alternatives.

Also it might be good to either take someone along who can make notes of what is said. Or ask the Dr if you can record the meeting on your phone, so you an go back and listen to what they said as sometimes in meetings like this you get alot of information and it's hard to take it all in at the time.

Also what people find really useful is writing a list of questions they want to ask. So on the day if your kind goes blank you go to the list and ask the questions from there.

So these are some things I'd recommend asking about your surgery. Although they might not all make sense right now they are good things to know for when you've had a chance to read up more on the condition.

Where was the endometriosis found?

How was it removed? Ablation or excision?

Was it all removed or were there any areas where removal was not possible?

What are the next steps your recommend?

If you'd like children at some point also ask if they think if your fertility has been effected.

If you find that they are not a specialist in endo, you can also ask if they will refer you to a bsge endo center (in Scotland your gynecologist has to refer you but in England a gp can, but so can a gynecologist, unfortunately I'm not sure about Wales or Ireland).

[StefaniaJW]

1) Who performed the cyst removal? Was it a BSGE certified surgeon or a Nancy Nook surgeon? If not, severe endometriosis is most likely not just on the ovaries. Ask your surgeon how much endo there was exactly, whether they performed ablation or excision surgery and preferably PM me the name of your surgeon so I can have a closer look at his/her methods and expertise.

2) Injections will be of hormones I presume. They do help sometimes but not always and most likely bring severe (in some cases life-long) side effects. I suggest you immediately tell us what kind of drug will be injected so I can provide papers to inform you better.

3) As far as both endo and fibro go, the best option is always to treat the root causes through lifestyle and dietary changes . Eating plenty of in-season and organic vegetables and plenty of freshly caught fish (especially mackerel and sardines) is pivotal. Some grass-fed meat, free range eggs, nuts, in-season and organic fruit, certain grains like wholerice, quinoa and amaranth are also good. In terms of drinking, water, matcha green tea, water-based kefir, homemade alcohol-free beet kvass, coconut milk, low-sugar smoothies are all allowed. As far as dressings and foor cooking, lime or lemon juice, salt, pepper, turmeric, zinger, parsley and all other herbs (apart from those that alter the hormone levels), extra virgin coconut and olive oil are allowed too. Everything processed, fried, coffee, alcohol, industrial meat and all dairy, refined carbs/wheat of any kind (pizza, bread, pasta, crackers, breadsticks, biscuits) should be completely avoided, at least for a while.

As far as lifestyle goes, make sure you get at least 9 hours of quality sleep per night, do mild physical activity outdoors (like walking or yoga in the park), even just for 15-20 minutes a day, try to use organic products to wash or clean your clothes and avoid plastic bottles and containers for your food. Make sure your oral hygiene is perfect.

4) Have you every had your thyroid hormones and vitamin D levels tested/checked out? If not, make sure you do, especially the vitamin D