Coping with emotional side of diagnosis - Endometriosis UK

Endometriosis UK

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Coping with emotional side of diagnosis

berry16 profile image

Hi! I'm new here and I'm only 5 days post laparoscopy which confirmed and attempted to remove stage 3 endometriosis. I'm recovering and making slow progress every day but I am really struggling with the mental side of the diagnosis. I am only 18 so it feels like no one else I know has to worry so much about the implications of their health. After being dismissed by health professionals for years it feels good to finally have an answer for all of my chronic pain but now I feel so down and distanced from the people I care about. I'm considering accessing some therapy to help improve my mood but how did anyone else cope with the bad news/mental side of living with this disorder? I've struggled for years with intense pain, vulvodynia, IBS and celiac and I'm beginning to feel hopeless. I have a fantastic support system at home I'm just struggling to cope with the uncertainty for my future. Thanks a lot, any experience/advice would be appreciated. My follow up consultation is in a few weeks which will include discussion of the mirena coil.

15 Replies

Hey lovely, I hope you make a quick recovery! I’m almost 4 weeks post op and I’m feeling a lot better. I’m 22 and I’ve been told we’ll need IVF in the future which was a huge thing for me to deal with. I’ve really struggled to cope since my surgery and to cope with what this means for my future. I don’t have much advice as I’m still struggling and trying to get through it but I wanted you to know you’re not alone and it’s hard to adjust to what it means for the future. If tou ever want to talk I’m always here ❤️

berry16 profile image
berry16 in reply to ZiggyandBC

Thank you so much for your reply - it means a lot to me to know that i’m not alone in dealing with such a weight at a young age! I would love to be able to talk to you about what we are going through and I am very sorry to hear about the hard news you’ve been given. I woke up from the procedure and was instantly told that they’d found a lot of endometriosis, including ovarian cysts and adhesions between quite a few organs. It’s so lovely to have supportive friends/family but it feels so good to have someone who can actually relate.

ZiggyandBC profile image
ZiggyandBC in reply to berry16

I had an ovarian cyst too and I was terrified that they’d have to remove my whole ovary! It’s such a scary experience! Feel free to PM me any time, but what you’re feeling is absolutely normal! I hope you feel better soon! ❤️

Hey,

I know how you feel!

I’m pretty young too (I’m 20) and was diagnosed about 2 months ago with stage 4 endo. I have also been experiencing chronic pain, vulvodynia and IBS for years now.

I have lots of moments where I just sit and think about how all my friends are living their lives and having fun while I’m in so much pain and constantly worrying about my future.

It’s a big thing to deal with, especially at a young age, so just remember it’s ok to struggle with it and get upset.

It’s great you have a good support system at home, but if you ever feel like you need someone else to chat to about it all, you can pop me a message! 😊

berry16 profile image
berry16 in reply to Bobs0207

Thanks so much for your reply - this really articulates how i feel about watching everyone else get to be normal! Yes I think it’s almost needed to grieve over this news and I’m just going to allow myself to be upset for a while! I’m also glad to hear someone else suffer with vulvodynia as I feel it’s much less known, but sorry to hear that it also causes you problems. Thanks again :)

Hi, so sorry to hear you're going through such big things at such a young age. It's alot to face when you should be enjoying life and planning your future. I was diagnosed at 36 and I had also suffered with my menstrual cycle for years. For me it was a relief, that it validated my pain, I had a name for it. I obviously wasn't happy to have this but the fact that it had a face and I could tackle it meant it gave me control of the situation.

I was very sad and depressed about the diagnosis because it meant having to deal with surgery and IVF. It took a long time to come to terms with. I had ideas of how we would conceive and have babies and I was devastated to know our only option was IVF.

Now I am out the other side, I am so grateful for IVF as I feel my baby kick inside me, something I never thought I would experience.

berry16 profile image
berry16 in reply to Hopeful1s

Thanks so much for your lovely reply! I felt exactly the same - validated! I had been feeling dismissed by doctors for a long time because I was “too young” for the disorder so I actively wanted a diagnosis. I guess it didn’t hit me until a few days after about what this meant for my health and future. But your story is so so encouraging to me, I think it’ll take me a while to accept and come to terms with but I hope to have success like you! I may have to accept IVF in the future but that’s not necessarily always a bad thing! Best of luck with your pregnancy and thanks again for the lovely reply! 💜

Hi there,

I just wanted to say that's a lot to have to take on when you are so young. I was diagnosed when I was 35, I'm 39 now and honestly I find it hard. I had fairly major endometriosis removed a month ago and it's only now that I am starting to feel remotely physically normal. But emotionally I've also had some dark days over the past few weeks.

Bear in mind that in addition to the mental load of the diagnosis, you have had massive amounts of drugs pumped into your body, plus the physical and mental stress of an operation, time in hospital, being forced into the role of 'patient' not 'you'. You may start to feel a bit better as all that fades.

While not an enviable diagnosis, at least you have it now. Good on you for insisting that it was investigated. Better now than in 10 years time as you can take action. I agree it seems so utterly unfair that some people seem to go through life with seemingly perfect health, while others seem to just collect more and more diagnoses.... it can make you feel very lonely.

You could certainly ask for counselling, I think it would be a reasonable. Your GP should be able to direct you. I've tried counselling for other health issues, personally I have found something called CBT (cognitive behavioral therapy) the most helpful. Not all counsellors use this technique, it's much more interactive and challenges your core beliefs. But you may find the traditional 'talking therapy' technique is fine for you.

Mirena coil- I've not used it, I understand it is often used for endometriosis. I am personally very wary of drugs placed internally that I cannot control. I would rather take a daily pill and be able to quickly stop if the side effects are a problem. Some people would rather not worry about remembering to take a tablet every day. There will be options so dont be afraid to ask what they are, what the pros and cons of each option is and ask what would happen if you did have side effects. The mirena coil may be a perfect choice for you but dont feel pressured into making the doctors favourite choice, it's your body.

Good luck!

berry16 profile image
berry16 in reply to Chicken1001

Wow! Thank you so much for such a detailed response. I’m getting slowly better with time physically and it’s really nice to have some mobility back. I’m just accepting the fact that it really does suck and that I’m allowed to be sad about it! I may consider contacting my GP to access some counselling to help me deal with the “unfairness” of it all. I’m really happy that you’re feeling slightly better and hope that your surgery was successful. It’s lovely to have people that relate. Yes I was sceptical around the coil because I have only just come off the pill a couple of months ago due to the effects on my mental health - having been on it since I was 14 because of course doctors have no other way of dealing with painful periods! I have been told that as this goes directly to the womb that it shouldn’t have this effect but if this entire experience has taught me anything it’s not to be afraid to be assertive with doctors and put my choice first. Thanks very much for taking time to write your reply and great advice! All the best :)

Chicken1001 profile image
Chicken1001 in reply to berry16

You are allowed to be sad. And yes never be afraid to query things with doctors, it's good for them!! Read up before appointments and (politely) challenge them if things are unclear. If you can get to the stage eventually where they ask if you are a medical student/ doctor then you are doing extremely well!! ;)

berry16 profile image
berry16 in reply to Chicken1001

Funnily enough I am actually studying biology!! And this has inspired me to research reproductive health and advocate for gender equality in health care and research!🥰

Chicken1001 profile image
Chicken1001 in reply to berry16

Perfect! I'm sure you will be a great ambassador for this disease and for other patients!

Awww :( Bless you sweetheart! It is a lot to deal with, but I think a lot of women on this forum would agree that you're one of the very few and dare I say, fortunate endo girls who's been brave enough to be so assertive to get your pain taken seriously and actually have a diagnosis at such a young age. Not to mention some form of treatment where they've been able (I hope) to remove some of the endometriosis.

Most women with the condition typically suffer with it for approximately 11 years before they are diagnosed so I have to say #winning !

I had bad period pain from the get-go, super heavy, cramps galore. Bowel symptoms started at around your age and I was continuously dismissed by any GP I saw, being told it was "normal". I finally had a laparoscopy at 27 which officially diagnosed me with the condition.

Knowledge is power and always remember that you know your body better than anyone else. Typical treatment for the condition is hormonal. The only thing that really helped me was finding a combined contraceptive pill that sat well with me (I've tried 6) and taking it continuously so I don't bleed. It was the last piece of advise an endo gynae gave me and the only thing that has helped, medically.

Diet is probably the most important factor. I HIGHLY recommend Dian Shepperson Mills' book - Endometriosis: A Key to Healing And Fertility Through Nutrition. She's an endometriosis nutritionist and has suffered with the condition herself. The information she shares in the book is invaluable. You can have a consultation with her too - my sister (another endo sufferer) had a zoom call with her last week and said she's absolutely lovely.

As for your mental health, YES definitely do speak to a professional if you feel it would help. There are therapists out there who specialise in treating people with physical/chronic health conditions. It's a lot to mentally digest and manage so please do get help if you need it.

Wishing you all the best and remember, you're not alone :)

Lena

berry16 profile image
berry16 in reply to LME5

Thank you so much for your lovely reply! That is so kind of you to recommend a book and consultant - i’ve been really looking for good books to read up on. I feel a lot better now that my pain has a name to it, I think I just felt upset that it had to in the first place! I am very fortunate to be confident enough and have a supportive family in pushing a diagnosis, as my mum is also a sufferer but I just always knew something wasn’t right! As soon as I was 13 I was throwing up every period and missing activities because of it - I was heavily persuaded by the doctors to go on the pill at such a young age and I switched between about 3/4 over the 5 years and it just always had a toll on my mental health which I hear is not uncommon. I think the next route for me might be another form of hormonal birth control as I’m reluctant now to go back on the pill after feeling like i’ve JUST got the real me back again. The mirena coil has been recommended to me. In terms of diet I am totally behind you that it’s crucial and Im quite aware of it anyway because I have celiac and IBS so that recommendation would be super useful for me! Thanks so much for your validation of my mental health - I feel like it can be so overlooked in healthcare especially upon diagnosis with a chronic disease. Thanks again for your lovely reply and advice!

LME5 profile image
LME5 in reply to berry16

You're most welcome. It's a scary disease because of the uncertainty around it. So little is known about it, generally speaking in the health system (as you'll read over and over again on this forum, doctors dismiss women all the time), and treatment wise. Dian Shepperson Mills' book was a real eye opener in terms of how little research is done for the disease, which is shameful. Your own suffering aside, you only have to read the accounts of 5 other women to know how strenuous it is to deal with, on so many levels. I should warn you that the book can be heavy with the old science lingo, but nothing Google can't help with ;)I hear you on the pill. Not only does it have physical side effects, it has mental health ones too. You're a bright young woman and seem to know your body really well. All you can do is trial out treatments, know your tolerance levels and if it's time to quit them, and (I hope) land on the best one for you, which may well be the Mirena Coil.

Have faith and stay strong. If you want to talk about anything else in more detail or just need to share, feel free to DM me x

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