So I’m new to the page and after going for multiple doctors appointments I’ve seen a gynaecologist who has confirmed he thinks I have endometriosis. He’s given me multiple options e.g keep taking the pill without a break, get the coil or have a laparoscopy and said ‘you decide’. So I’m a bit lost.
The pain is bad every month and looking to start a family next year after I get married (April).
So does anybody have any advise on the best course of action? Any help would be really appreciated !
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KatieT13
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It can be quite overwhelming to know what to do. You actually have quite a few options and it just depends on your outlook and how you want to approach things. There is lots of information on this site about the things the drs are offering you, you can search through and see what other people's experiences have been like of these treatments. I just wanted to let you know that there is an alternative approach.
My biggest piece of advice for you is to not try and make any decisions until you've done a bit of research. I don't think that Dr's give you enough information to be able to make informed decisions. I had a lap 2 years ago which was clear but I've later found out I do have endo, which was diagnosed by an mri through orthopaedics.... I had that surgery for nothing. I didn't know to ask if my surgeon was bsge registered or if he had experience of endo. As it turned out, he was a specialist in cancer and apparently surgeons who don't specialise in endo are more likely to miss it. The NICE guidelines for endo are a good place to start to make sure you at least know what the drs should be doing for you. If you just Google it, you'll find it. All your doctors a million questions, don't agree to treatment or testing until you understand what they're doing.
If you do a bit of research, you'll soon realise that not much is known about endo. We don't know why we get out, what causes it and what's the best way to treat it. We don't know why some people with masses of it hardly have any symptoms, yet some with tiny patches are hugely affected. The location of the endo doesn't have much of a baring on symptoms either.
Other than surgery to remove things, which comes with its own risks of internal scars (adhesions) which can affect fertility and can cause other symptoms like pain, the drs main form of treatment is synthetic hormones. It seems this is what you've been offered. Some women do have a reduction in symptoms with hormone treatment but many don't and for many, it makes things worse. My personal view is that synthetic hormones are to be avoided as much as possible as they mess around with too much of the bodies very fine balanced systems.
If you are at all interested in dealing with this on a natural way and getting to what is underlying any endo or other hormone imbalance, if I were you, I would read about estrogen dominance. Read Dr John Lee's book what doctors don't tell you about peremenopause. And Wendy laidlaw 'healing endometriosis naturally'. If you feel this applies to you, then I would get a saliva test to measure estrogen, progesterone & cortisol, you'd likely need to pay for this privately. If this is for you, I'd make some changes to try and balance hormones (diet, lifestyle, emotional work) while also using the bio identical progesterone cream. After about 3 months, if you don't see an improvement, then I'd be looking for some expert advice, I'd be looking to see sometime who specialises in women's health using holistic approaches.
My personal belief is that our medical doctors really don't understand our hormones and what happens when they get out of balance.
I'm just sharing my view that I've firmed after my experiences and doing a lot of of research. I'm just starting the treatment I've mentioned above and hoping more than anything that I can avoid the awful treatments the drs have offered me.
Thank you so much for your replies! it is a bit of a minefield. I just want to know what's going on so im feeling that the laparoscopy might be the way to go.. does anyone know how serious/likely the risks are? Obviously I'm worried about making everything worse!
It's a very low risk surgery. It's keyhole, tiny incisions and tiny scars left. I was tricked before mine but honestly, it was not a big deal. I had a slow recovery because I'm pretty unwell at it is. I think for most it's about 2 weeks.
Internally, you can't know whether it'll cause you scaring, that's really the risk you need to weigh up. You'll not really know afterwards though.
Adding to the other replies, I’d maybe ask your gp if he could refer you for an MRI before you decide?
See if anything obvious shows up.
From what I’ve picked up from this wonderful site, MRIs don’t always pick everything up.. but it might help you make a more informed decision for your next move.
I have the coil and although it helped with some major symptoms I was experiencing for probably 8 months to a year.. here I am again, big visible lump by my csection scar (so somewhere in my abdominal wall) undiagnosed, suffering symptoms and waiting for mri results before they set a date for my first explorative lap.
Really look into your options, weigh it up with your symptoms or side effects you might get from treatment options, decide what you’re willing to go through and for how long.
I had a Lap In January this year and it was very successful. They removed it all and I did get a lot of relief for a few months. It does take a few weeks to fully get your strength back I would say but I don’t regret getting it everyone is different.
As there is no cure for endometriosis there are things to try and keep the symptoms at bay.
How are you on contraception? I am really sensitive to hormones so cannot go on the mini pill or coil or anything (I have tried them all) but I know a lot of women find these work for them and really help with the symptoms.
Going by my symptoms I think Mine has come back and I am currently having the Prostap injections which I am not feeling great on alot of side effects but then some women don’t hardly have any so it’s probably a case of trying out differ things for you.
I have decided to not carry on with these injections and my next step is to look into a lot more herbal/natural/holistic therapies. Like reflexology, acupuncture, yoga etc.
Also, as women with endo usually have higher eastrogen levels I try to reduce animal products for example, meat and dairy. I also find cutting out wheat/gluten helps with the pain. I bought a couple of books of amazon when I was diagnosed..
‘Endometriosis a key to healing and fertility through nutrition by Dian Shepperson Mills & Micheal Vernon.
Also, I have seen a couple of people on here mention books by Dr John R Lee which are supposed to be good.
The doctors and consultants do not know an awful lot about nutrition and holistic therapies and how it can help so they don’t discuss it. They will only offer you hormone treatment and pain relief treatment but these do not work for me.
Having the lap and the endo removed should certainly give U some relief and improve your chances of fertility (which very well may not even be effected anyway)
It’s very worrying and daunting when you first get diagnosed especially when your are wanting a family.
I would advise to focus on some self care daily...mediation, good nutrition etc. This is what I try to do...not always successful. But we are only human aren’t we
I wish you all the best.
P.s I only joined this site a few days ago myself and have already got a lot of advise and Info
If you go for the lap right away, that's a good idea, but please taken Visanne or other hormonal drug from right after surgery to ensure you don't get it back!
If you choose to take hormones for a while to reduce the damage of cysts and adhesions and then go for a lap, that's a good idea.
But PLEASE, if you choose for a lap at some point, GET EXCISION SURGERY AT AN ENDO CENTER WITH SPECIALIZED AND ESPECIALLY EXPERIENCES SURGEONS, otherwise it'll be pointless, they will not be careful when cutting you and you'll get adhesions right after surgery. They need to know what they're doing and must have been it doing it for a very long time and on thousands of endo sisters.
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alot of side effects but then some women don’t hardly have any so it’s probably a case of trying out differ things for you.
HRT and Prostap- advice please 
Advise please
Undiagnosed, symptoms advise please!
Advise please ...🥺
