Half-diagnosed - What do I do?! - Endometriosis UK

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Half-diagnosed - What do I do?!

Billiejo96 profile image
20 Replies

Hi! So I was informed by my Gynaecologist early last year that she was certain I had endo. I ticked off most of the symptoms. She said that we could clarify this by having surgery, but she wasn't willing to send me at such a young age. As I also wasn't looking to conceive at the time, she told me it was nothing to worry about. That being said, I am worried. I do want to have children in the future and the uncertainty is awful. The whole not knowing of whether I even have endo is also unsettling. I am currently taking Microgynon to settle the symptoms. I'm just looking for some advice really... all is welcome!

20 Replies
Christin_a profile image
Christin_a

I recommend having surgery (with someone who knows about endo as I'm not convinced they do of they think they only need to intervene at the point you may want to conceive.

The reason I recommend this is because you'll have a definite diagnosis, you'll know where has been effected. During your surgery you should also have it removed, this should ease your symptoms. If you think if it like a weed would you leave the weed to grow until you want to plant some flowers when it could have run rampant on your lawn? Or do you remove the weed as you can already see it's there?

It is your choice but make an informed choice by reading the pros and cons for both sides.

If you do go for surgery make sure that your surgeon has a special interest in endo this is a requirement for anyone going through the process of diagnosis/treatment for endometriosis on the NHS. But doesn't stop under qualified gynecologist trying to diagnosis and treat it.

Billiejo11 profile image
Billiejo11 in reply to Christin_a

My Facebook won’t let me log into my original profile, so here I am!

Thank you for advice. I’m extremely worried about having surgery. I’ve never had a surgery before and I have a lot of anxieties around hospitals etc. I’m also committed to work and desperately need the money, so the finance issue is also a worry.

I think I’ve got to the point of thinking, “well, if I can’t have kids I can’t have kids”. Yet all I’ve ever wanted to do is be a mother. It’s left me feeling deflated with not knowing. So I do think surgery would be the best option, it’s just an anxiety I’m going to need to battle.

Brambledoggy profile image
Brambledoggy

I’m afraid endometriosis is a condition very much to be worried about and if your so called gynaecologist said this complacently to you, you probably need to find another. Doesn’t matter about your age. In some ways, younger is better as you have your whole life ahead of you and this should be dealt with ASAP. Remember 1) the ONLY way to get rid of endometrial lesions, whenever they are located is to undergo a laparoscopic surgery and have any lesions removed by deep excision surgery by a very good surgeon who knows EXACTLY what they’re looking for and EXACTLY how to remove it. Don’t let them ablate you, laser you, burn it off, whatever else. If you’re young and want children there’s a better chance of being able to conceive this way. The contraceptive pill may ease your symptoms but will only mask matters and down the line if nothing is done you may find your endo has very much reared it’s ugly heard again. Read my profile if you like and ask away if you have any questions. I’m not a GP or gynaecologist but will try and help as far as my knowledge and experience goes. Nina.

Billiejo11 profile image
Billiejo11 in reply to Brambledoggy

I can’t log into my original profile so here I am! Thank you for your advice. As I stated in the above reply, I have a lot of anxieties around hospitals and I’ve never had a surgery before. I’d like to avoid it if I can but I know that it’s probably my best shot at finding out what’s really going on. I think I’m also worried about having surgery and then it turns out I don’t even have endo. I’m finding this situation to be very mentally draining.

Thanks again for your advice x

AllthatGlitters profile image
AllthatGlitters

Hi I would personally go to another GP and one that will take you more seriously. It’s your body and you have every right to have a 100% confirmed diagnosis (or not) of endometriosis. It shouldn’t matter your age, I would push for a laparoscopy to know one way or another. There are also other conditions out there such as adenomyosis which i have too, so you really need to know what is going on in your own body.

Wishing you all the best as it’s so hard going through pain etc and not feeling supported x

Billiejo11 profile image
Billiejo11 in reply to AllthatGlitters

I can’t log into my original account so here I am! Thank you for your advice. I think I will probably speak with my GP about finding another gynaecologist. I was so certain she was good at her job and I felt okay about it all. But the uncertainty has been eating away at me. Perhaps even a second opinion would help settle me a bit more and help me make a decision. I’m just petrified to have surgery... x

Brambledoggy profile image
Brambledoggy

I really get you. I’ve been in denial again too lately and scared of yet another surgery which is why I’m URGING you to get the right treatment first time around. I’ve been “opened up” a lot!!!! over the years and I find it gruesome too. I don’t want you to go through what I’ve gone through and am still going through. I was terrified on every surgical occasion apart from my ectopic pregnancy (Fallopian tubes blocked with endo lesions) which was so life threatening that I didn’t have time to think. I want to try and help you. And more than that I want you to get the RIGHT help. Don’t give up on being a mother and try and contain your feelings and put them into some kind of perspective. You will be ok. With the right help and the right surgeon and the right decision, you’re going to be fine. I really urge you to read that book, or if not that book, google Dr Seckin and look at his website. There are cases exactly like yours on there that will give you some comfort and reassurance. Ladies with severe debilitating endo that went on to have families. But you need to get diagnosed as a first step, like others have said you may not actually have endometriosis but something else. In the right hands your life can be what you want it to be. Get a second opinion. Get informed. If it doesn’t feel right, it probably isn’t. P.S hope you have some support around you. And P.P.S (I’m scared too) ❤️

Billiejo96 profile image
Billiejo96 in reply to Brambledoggy

God that’s so awful. I’m sending all my best wishes to you. I can’t imagine what you’ve been through.

I think I’m definitely going to go to my GP and ask for another appointment with somebody. See what they say about it. I don’t want to have surgery if I don’t have to... so I rather get a second opinion and see where I end up.

I’ll give that book a read too. Thank you so much for opening up to me and offering support. It’s really appreciated. And I hope everything works out for you too. 💕

Toni46197 profile image
Toni46197

I’m in the exactly same boat.. I’m 22 and have a 1 year old. But I ’ve had the symptoms since I was really young. My doctor has been brilliant and sent me to all the referrals. They are pretty sure I have endo on the bowel but the gyno said that because I’m so young he’s not bothered wether I have the surgery and get a diagnosis or not, he’s left it down to me to decide but I’m really stuck as to what to do..

Billiejo96 profile image
Billiejo96 in reply to Toni46197

Yeah I feel you. The uncertainty is what’s bothering me as I want to know that I am able to have children in the future.

I guess for you it’s whether or not you feel like having an official diagnosis will help you. If it will, then you may as well go for the surgery if you’re up for it. I think that’s what my head is swaying towards, it’s just difficult. I need to way up the pros and cons x

Harley9 profile image
Harley9

Hi Billiejo, just want to reach out and let you know my journey - I’m 27 and have had symptoms since I was 14, and I was personally certain of endometriosis since 21, even though some of my NHS gynaecologists were shying away from the term. I was given a LOT of bad advice over the last six years of “maybe having endometriosis” from the doctors that I should have been able to trust. I really wish that I pushed back harder and got referred to true specialists earlier on. Recently I felt brave enough to go down the proper route and I found the right gynaecologist, I instantly felt like I could trust him to perform the surgery and loads of my anxieties disappeared.

It’s now three weeks since my excision laparoscopy and I couldn’t be happier. I was in pain for around a week afterwards, felt sensitive for the second week, but right now is the most pain-free I’ve ever been in 10+ years.

My biggest advice is that there is NO point waiting. The sooner you find a true specialist and have excision laparoscopy (assuming that they do find endometriosis of course...), the sooner you will be in less pain.

More than happy to discuss any aspects you find scary, feel free to message me 💛xx

Billiejo96 profile image
Billiejo96 in reply to Harley9

Thank you so much for this. I really do appreciate it, and I’m glad your journey is getting easier! Xx

StefaniaJW profile image
StefaniaJW

You need to seek a well-trained and experienced excision surgeon and discuss surgery with him. That's your best option. PM if you need names. Take care!

Billiejo96 profile image
Billiejo96 in reply to StefaniaJW

Thank you! I got in touch with my GP today. She said she’s happy to organise an appointment with my gynaecologist or refer me to a new one. So going to go from there x

StefaniaJW profile image
StefaniaJW in reply to Billiejo96

The GP referring to a regular gynaecologist is absolutely pointless and very counterproductive. Please, only get excision with an extremely good surgeon. There are only a handful throughout the country and they are either BSGE-certified or Nancy Nook surgeons. Make sure to get referred to a really great one or make sure he/she refers you to the one you want and have researched. Get surgery done right the first time. You have no idea how pivotal this is and how hard it is to find an endo specialist. It's the hardest of all quests for an endo sufferer. Again, if you need names, please contact me.

Billiejo96 profile image
Billiejo96 in reply to StefaniaJW

Thanks again. My problem is I am too financially unstable to do this myself, and would have to go through the NHS. Therefore, would I even have a choice? I’m petrified to have surgery and to be put to sleep. The whole thought of it is causing me quite a lot of anxiety. So I’d like to just start off by having a chat with someone who knows what they’re talking about so I can at least weigh up the pros and cons. I’m too much of an over thinker for things like this!

Harley9 profile image
Harley9 in reply to Billiejo96

I completely echo Stefania’s points, unfortunately speaking to a regular gynaecologist is as useful as speaking to a GP about this. You really should ensure you get the right path first time. I can’t give much advice with the NHS as I used private insurance for mine because my nearest choice was private, but there are a good handful of NHS consultants that Nancy’s Nook recommend, and within BSGE centres. Use the search bar on Nancy’s Nook and other forums for NHS and there are a lot of results :)x

Harley9 profile image
Harley9 in reply to Harley9

P.S well done for raising with your GP - it’s a big step, one that I was very nervous to do the first time! Glad that they are supporting you in referrals :)

StefaniaJW profile image
StefaniaJW in reply to Billiejo96

Surgery does bring anxiety, that's perfectly normal. But anxiety because you have to undergo surgery is one thing. Leaving your fate and potential future fertility in the hands of a random gyn with little to no experience is another thing.

You can get a very good surgeon through the NHS no problem, but research him/her before you decide. That's all I'm saying

Check out BSGE centres and look for reviews online on the centres closer to you that operate within/through the NSH: bsge.org.uk/centre/

Also visit the Nancy Nook group on Facebook!!

Billiejo96 profile image
Billiejo96 in reply to StefaniaJW

Thank you both. I’ll definitely take a look x

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