Any positive stories or outcomes?

[Danceloverx]

Hi I was just wondering if any one has any positive stories or outcomes to share. I’m becoming really depressed as all I’m reading is ‘infertility’ ‘severe pain’ ‘incurable’ etc 😣

I’m only 19 and am waiting on a laparoscopy to diagnose endo (suspected due to 3 days of severe pain per month and irregular bleeding and spotting). The specialist said he would remove endometriosis if he found any. After my consultation I felt really positive as the doctor said it’s nothing to worry about however the internet has made me feel terrible😭

Are there any cases where endo has been removed and not actually come back? Or just anything positive to share.

I’m really struggling to cope with this as from what I’ve read endo always comes back, some people feel worse after there Lap, and people are struggling to manage this for the rest of there lives.

This is so daunting to me, only being 19 and having to thing about struggling with this for the rest of my life. Especially as I know I want children in the future but not yet. I just want to be normal and have my life back as I’m currently in first year of university and feel like Ive had my life (partying, stuyding, dating) taken away from me.

Also can any one recommend any thing to help me deal with this mentally, a good support group/ any one to talk too?

[Pinkyandthebrain]

When I first found this page I felt relieved to find so many stories that matched my own, but after a while reading the same things over and over (in conjunction with my own pain) really started to get me down.

So I took a little break from reading things online and concentrated on things like therapy and meditation which really helped me view things differently and build better coping strategies. I was also diagnosed with clinical depression and started taking antidepressants- something I had resisted for years, but since I’ve been taking them my pain levels have dropped dramatically. I don’t know how it all works but I know chronic pain and depression can go hand in hand and feed off each other?

Now that my head is in a better place I’ve been able to start exercising again which is making my mood and pain levels even better - I’m able to live again, rather than just going from period to period.

Things aren’t perfect; I’m trying to get pregnant and haven’t had any success so far but there is hope in terms of having a somewhat ‘normal’ life.

Sorry for the essay, but your post really reminded me of myself xx

[Lewisisgreen]

I think if reading about specific things on the internet is causing you distress then take a big break.

The thing is on a forum like this, lots of people have been struggling with symptoms for a long time and it can be so frustrating and distressing. Lots of people have been really let down by medical professionals and are trying to get their pain taken seriously.

Not to say that there isn't tons of good advice here, just that it's also a place to vent and let off steam.

Try seeking out specific things you want to know about endo, questions about treatment etc etc.

Lots of good books available about endometriosis right now.

You might have a local endometriosis support group near where you live.

Lots of good information on Instagram if you have an account there.

Your university might have a support group?

It's really good you are being taken seriously and are seeing a specialist who has agreed to a laparoscopy. That's a positive😊 The earlier the better if it is endometriosis.

The endometriosis specialist team normally have a specialist nurse attached who you could always ask for advice.

Try not to overwhelm yourself right now and look to doing things that might help reduce your stress levels. I've been finding yoga and meditation helpful over the last few months in particular.

All the best and good luck x

[Pippax]

Hi,

It is human nature to speak up when something is wrong more than when something is good. (You’re more likely to post a complaint about a restaurant than you are a positive review.) So, there is going to be more bad endo stories than good ones.

Just because other women have a terrible experience doesn’t mean you will. I have severe endo but my symptoms/pain are very manageable. Some women have an op and then feel better and get back to normal. For some women it doesn’t come back. Some women have no issues having children.

Try to avoid worrying about something that hasn’t happened yet and may never happen. This worry, rather than endo, could end up being what limits you from doing all the things you want to do.

Rather than reading more bad stories, my suggestion would be to go find something non-endo related to distract and cheer you up. Watch some comedy, buy some flowers, video call your friends... whatever works for you. Do for yourself what you would do for your best friend.

Pippa x

[Danceloverx in reply to Pippax]

Thank you so much x

[Shefa in reply to Pippax]

"Do for yourself what you would do for your best friend" is one of the best self care tips I've heard

[Pippax in reply to Shefa]

I agree, not sure where I got it from but its one of my mantras now.

[Thecrazypugglelady]

Maybe when you read try to look at is as advice so bad day you can come on here rant and someone may have something helpful to suggest. It sounds all doom and gloom but everyone's endo affects each person differently so some people have treatment and get no pain whilst for others it doesn't.

If it helps...

I got told I will not have children so accepted that at 19. I carried on with my life at 22 I fell pregnant (I still cant get my head around it!) It came with its moments but shes a healthy strong 6 year old. I am well and truly blessed. My friend has endo, pcos, ic and has 2 children possibly expecting her 3rd. Everyone is different though so if people have put posts again it's for morral support. I personally struggle daily now but I find it helps to keep telling people you have endo and they pick you up or help you out where they can and if they dont I see it as looking at reconsidering if them people are someone you need to be around if they aren't going to support the good and bad times.

I hope to have my success story after my next op I am staying positive and holding onto the hope that that will finally help me. I hope that you have your own positive story to share with others to help stay positive and aspire to your probably right though we all need some positive to look to.😊 x

[BrightLights88]

Hi,

So I was diagnosed when I was 28. I had a few days of severe pelvic pain and abdominal pain, I had a transvaginal scan whilst admitted in hospital. I spent 2 weeks in hospital, crying myself to sleep every night not knowing what's going to happen to me. I felt depressed in hospital because all I was surrounded by was the these blue curtains only seeing my family here and there.

Doctors couldn't answer my questions. They kept saying we are still figuring out why ladies have endometriosis, then being told the same fertility issues etc.

So I had counselling sessions over the phone I joined through my work insurance. Which is anonymous and no one at work will know. Every week my counsellor will call me for 1 hr and we will discuss and I was able to talk to her and cry and tell her what I'm feeling without being judged etc. After 6sessions it really helped. Mentally and emotionally. I was able to then tell people what I had without breaking down.

I then joined this forum and it helped because I would post things on here and was able to just talk to other endo ladies.

I the referred myself to a endo centre through the bsge website. Went to my gp and told them I want to be referred to this hospital for my endo because I feel like the care under gynae is too slow and I have had 9 admissions within the space of 11months and I'm feeling drained out with this constant flare up. He booked me in and within 3 months of being with this hospital they done a mri, consultation and my surgery in aug 2019. I am now endo free since Jan 2020 after having another mri to check if everything is clear. i am not on any medication nor having any issues with period.

What I have done is cut down on my intake if cheese and mayo. As they said endo is a inflammatory disease. So many people recommend gluten free diet but personally that's not for me, it's expensive.

I pray you become stronger and become a warrior like me. Although I say to people my 28 and 29th birthday was stolen from me during the year I had gone through endometriosis pain. I am now 31 and trying to settle down so I can try for a baby.

[Devils_Advocate]

I was diagnosed in my early 20's and it was terrifying.

There are usually local support groups, so I would recommend going along to one of them. You can find them through the endometriosis uk website I think.

In relation to positives I have PCOS and severe endo but have two beautiful healthy children. I was told it fertility may be an issue too.

As much as possible I exercise and look after my body. I eat well, although I am vegan as dairy exacerbated my symptoms. It is important to make time for your wellbeing.

I have had multiple surgeries, so yes mine has come back. But I have a career, family, social life etc. So people can live a fulfilled life even with the illness.

Message me if you have any questions

D x

[Jaas1]

Hey! I've been an endo sufferer for about 5 years now and I'm currently 41 weeks pregnant. I've been through all the emotions but trust me, if you work on your health you will get the results. I had a lap done and endo came back within a year. I managed it by going on the evra patch (against my will but had no choice at the time as pain was too much but I wanted to conceive). Whilst on the patch I focused on my diet religiously for about a year. Cut out all cards and sugar as this feeds endo. I replaced it with anti inflammatory foods and herbs. My breakfast would consist of sunflower seeds, hemp seeds, flax seeds, Chia seeds, goji berries, cocoa powder, soya milk (I also switched to soya milk instead of normal) and 1 organic banana. These all have anti inflammatory properties. I would also drink milk with a bit of turmeric about once a week as this is also anti inflammatory and sometimes boil water and add ginger and cinnamon about once a week. Take a look at my profile and look at the pic of the white board I created as it has all the info on there. If you can't find it give me a shout and I'll re post it. Try not to Google too much stuff as everyone is different. There is hope as long as you work on yourself and have faith, trust me! x

[edonn]

Hey, I've just come across your post but know it's from a while ago. I just want to add that your post is such a great thing to see. If you take only one thing from it, let it be this...

You are seeking the good stories, you know they are out there, it means you know there can be easier times and you are willing to keep going to get there.

You might feel desperate for better times right now, but reframe your thoughts and see it not as your mind and body desperate but as empowered and not giving in.

I was so happy to find your post, it has made me realise....yep, she's like me, looking for more life and fun and less bad news.