So I’m 18 and I’ve been experiencing symptoms especially excruciating pain for the last year. I’m on my period now (accidentally after I forgot to take the pill two days in a row whilst travelling) and I’m in agonising pain I can’t get out of bed and I can’t stop crying, it affects my mood so much too I feel so depressed and it affects every inch of my life. I have an exploratory laparoscopy scheduled for mid March, with the possibility of getting rid of the tissue if they find anything and I’m just so scared. I feel really young to be having this but I can’t go on in this pain. At the same time I’m anxious if they find nothing then is it all in my head am I going mad but if they do find it is that even worse bc I don’t want this to affect my life forever on. Like I’m so scared about afterwards and how this is going to affect me. I just wondered whether anyone could give me some advice or what to expect.
Ah, wow, you're so young to be going through this. But in a way it's good because you know you're body isn't right and you want to find out what's wrong. Hopefully it'll come round quick.
I get that if you have endo it could be scary; from a experience point of view, you're seeking help / medical treatment really young so you can control your endo symptoms and have a relatively normal life.
I've written down my experience of stuff; I know you're a lot younger but it may help both mentally and physically to know what goes on and what others have been through. I didn't know I had endo and left it a lot later to be diagnosed; doctors do tend to ignore us. You can find it via my profile or search on here for:
"All this effort does pay off - my story - hope it helps !"
Just remember whatever the diagnosis you are one step closer to controlling and managing how you feel; and even if there's medication you need to take, if it helps you be more "normal" and enjoy life, that's good.
The biggest thing I've learned from all my experience is not to let it get you down, you are strong, you will cope and flourish if you want to. Oh and remember to be open with someone in your life even if it's a family member, a friend, a boyfriend or girlfriend, honesty is the best thing, don't hide how you feel or what you think. Take that person with you to appointments; they can see and understand how you feel, can listen to the information (extra pair of ears), and discuss their concerns like how they can help.
Regarding your laparoscopy, check with the specialist secretary if they are going to remove anything they find including endo, cysts, take biopsies, you really need to know that before as it'll change your recovery time plus outcome - if they don't remove stuff you'll be on the waiting list for another lap. Also check whether you will have follow up appointments to discuss next steps. Realistically aim for 50% reduction in symptoms if the do remove endo; so it won't magically all get better which is a bit rubbish but if it helps you be more yourself then it's all good. Bear in mind at your follow up appointments you may discuss hormone treatment to control the endo regrowth - it never goes. Decide if you like the idea of hormones / willing to try and which ones, so you'll have some questions at your follow up.
Thank you so much for your advice. It really means a lot to me that you went out your way to reply. I know that on my consent form I’ve agreed that if anything is found I am happy for the gynae to remove it during the surgery and am yet to receive a date for a follow up appointment but have already done some research and spoken to my GP about getting a coil fitted (I think the mirena coil) as I’m currently on the pill but have then awful periods when they do come around. I am very open with my family and partner about this all as I feel like hiding it will only be detrimental to myself and also am not scared or embarrassed by periods or menstrual issues at all and think it best to talk about them in order for them to become more spoken about and therefore more acknowledged within society as a whole. Thank you again! It really means a lot to me.
Ask on here abut people's stories with the mirena coil; there's mixed reviews.
My specialist and I didn't opt for it as it's a good idea to know what your base level is after recovery and any other symptoms can be managed later. It's a hormone so comes with side effects that could potentially be worse than the removed endo improved symptoms. I thought I'll just see what happens naturally; I don't like the idea of a hormone there when my symptoms are now only around my period and can be managed with normal painkillers and mental exercises to stay calm.
It won't stop endo regrowth but it may slow it down, however you may not know what symptoms are endo that you'll just have and what are side effects of the coil. If you have it fitted by a lap, most docs won't remove it and some women have had to pay privately for it to be removed. Plus they usually say wait about 6 to 9 months for symptoms from the coil to settle down before they really look at changing it if there's issues. Some women get on with it, others don't, just being honest.
Take your partner to the appointments! Seriously it will help, as my specialist explained stuff to him, how he can help, has he noticed any differences, plus you'll be stronger together if you have each others support xx
Hey Louise, farahziya has done a really good response and the only thing really I would add is to check that whoever is going to do your laparoscopy is appropriately experienced - you must at least be under a gynae with specialist interest in Endo and not just a general gynae as set out I the NICE guidelines. It is really important that this is the case as general gynaes without the specialist interest may not be skilled enough to look everywhere needed and recognise Endo in its different forms.
Thank you for mentioning this! I am unsure who will be doing my surgery but I will have a look for sure because this sounds very important. I’m sorry for being ignorant but what are the NICE guidelines? Is that something I should read?
Not at all, I just didn't want to assume and tell you something you did know 😊 really important to read them - Google NICE guidelines Endometriosis 2017 and it comes up and you can download it (sorry, couldn't see how to share it) and 1.1.3 says you need to have access to a specialist gynae:
Gynaecology services for women with suspected or confirmed endometriosis
should have access to:
a gynaecologist with expertise in diagnosing and managing endometriosis, including
training and skills in laparoscopic surgery
a gynaecology specialist nurse with expertise in endometriosis
a multidisciplinary pain management service
a healthcare professional with an interest in gynaecological imaging
fertility services.
and really important it's only them that operates on you. If there is a suspicion that it is more complex 1.4.2 says:
Refer women to a specialist endometriosis service (endometriosis centre) if they
have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter.
I know it's a lot to take in, especially when you are trying to get your head around it all and trust you will have been referred to the right person - but unfortunately even those we would regard as the specialists aren't always following the guidelines and so women are having to do their own prep work to make sure they are being seen by the right people.
Yea you’re totally right, in a circumstance like this it’s mega important for patients themselves to be really educated so they can make sure everything is the best possible I can get. Thank you so much for directing towards this I will definitely start reading this now!
No problema at all, I didn't know about some of this before starting out with my appointments and people kindly showed me the way. Reflecting back on some of the things I was told in my first appointments by non specialists that I now know were false quite shocked me!
I was lucky that mine was an endo specialist anyways. So I forget to let others know the guidelines.
The best book for reading up and educating is:
"Living Well with Endometriosis: What Your Doctor Doesn't Tell You...That You Need to Know " by Kerry-Ann Morris, I got it from Amazon. It's brilliant, letting you know what it is, symptoms, diagnosis, treatment, side effects of different treatments, pros and cons, what to expect for surgery, diet, lifestyle, symptom management. It includes cases, stories, specialists contributions, what to ask your specialist, what to look out for regarding care, and goes into a lot of detail. Definitely recommend it, it's also good for anyone wanting to just get clued up.
yip, the best advise i can give you is to read this book: "The Doctor Will See You Now", Author Tamer Seckin, M.D. He's one of the best endometriosis doctors in the world, and he helps you to understand and be more aware about endo. You'll feel so much better once you've read it. Also look at his website: tamerseckin.
This is the best ENDO advice from the best doctor really.
Just know you aren’t alone. I’m 19 and waiting for my gynae referral. My best friend was only 12 when they discovered she had endo. I’m not really able to give much advice beyond - do not push yourself, you know your body best and don’t take no for an answer. I hope all goes well 💜
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Is this fair according to NHS Constitution ?
help please :(
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