Endometriosis UK
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How to stay positive

Hi everyone,

I have recently been treated via laraporscopy for endometriosis back in May, during this I was working part time and I had previously dropped out of sixth form due to anxiety and stress, I finally had my op and all seemed amazing so I applied to start at college and I’m really enjoying it! However the past couple of weeks have been a nightmare, I’ve been in so much pain and have felt tired all of the time to the point that my consultant wants to do another lap on 6th December, however during this time I’ve been in and out of college to the point that me staying on my course has been questioned and I have hardly been into work so I have no income at all, I hate asking my parents for money help because being 19 I would like to take responsibility, my mum is very supportive but can sometimes put me down and make me feel like I’m being dramatic when I’m in pain, my partner is very understanding and has been my rock for a long time, but all I ever want to do is curl up into a ball and cry, I feel my depression coming back an I see no end to this constant pain, has anyone got any advice for me to help stay positive? Thanks x

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Oh I’m so sorry to hear you’re having such a hard time 😔

I understand your frustration. I started my majors courses this semester and I had a lap for endo two weeks before the semester started. Then just last Monday I had yet another surgery for my gallbladder. I’m thankful my professors are so understanding and they are helping me through it school wise.

It’s hard to stay positive. I’ve battled with depression and anxiety for years. Thankfully (like you) I have a supportive significant other.

The things that help me most are music, being outdoors, working out (when I’m not dying in pain.. suppose that’s not too helpful at the moment), video games, and my dog. (Besides my supportive family and fiancé, but I realize not everyone has a great relationship with their family and I’m not accusing you of not having that!)

It’s hard to find the things that help when you feel so low. I find talking it out on forums like this one or talking to a friend really helps. Sharing my story with people helps me look at it in a different perspective, and I start to see the things I’m proud of myself for.

If you’re ever having a hard time feel free to message me x

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Hello,

That's great advise. I used to dance alot before this whatever it is hit me hard.

I try every now and then to go but i feel forced to rest my body which is frustrating. As i am the kind of person that needs to be out and about.

I was recently treated for a small amount of endo in june. Consultant didnt seem that bothered.

But they have since seen a small polyp on my gallbladder in ultra sound and saying it is nothing. And yet im getting a constant poking in my ribs under right rib. Coughing and bringing up green phlegm and sometimes blood after i am sick. They cant find any ulcers.

But say its very rare to have endo on gallbladder?!

But also every cycle im getting left flank kidney pain and keep thinking i have kidney infection or stones. And also literally everytime im due on i get a water infection or what feels like one. Also after sex. Sex can be painful under the ribs and im getting scared even to have it anymore. As i dont want to keep getting these infection feelings.

And my voice gets really hoarse too from this rib thing.

If they cant find ulcers or cancer?! What the hell is it?! Why is it worse around my cycle and yet they seem not bothered.

I feel i cant continue my massage course because this posture increases the pain. And i feel unreliable to work for anyone.

I walked out on my job because my boss was horrendous beyond anyone imagination.

This disease if it is this is awful and really is destroying my life and i hate it.

I refuse to believe this is it for me. But its really knocking me down into depression now.

Im sorry to go on. It was meant to be a short message?!

Was your gallbladder endo?

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I had chronic cholecystitis so no it wasn’t endo on my gallbladder. But if you have a polyp it could be causing you trouble. I’d seek a second opinion on that.

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Oh lovely, I know exactly how you feel.

All I seem to do at the moment is cry, cry and then cry some more.

Infact if I'm not crying I'm going 'ooh or arghh or owww' in pain!

But hang on a minute, don't forget to acknowledge how far you've came, you are holding down a job and college, that's amazing!!

I'm sorry to hear your mum can sometimes make you feel like your being a drama queen etc. That must suck!

Do you take decent painkillers? Just that you said your pain has increased lately, maybe a trip to your GP or consultant to discuss further options might be helpful?

I'm having another lap done on the 13th December so I won't be far behind you!

I'm pleased to hear that your partner is very supportive and is always there for you! So is mine, and it really does make all the difference when they understand!

If you ever feel like a chat (it doesn't have to be endo related) just drop me a message! Because sometimes it's just good to talk about other things.

Keep smiling sweetie xx

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Sending you my love and a really big hug. Xx

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Did you have a consultation after the lap, about what they had found and exactly what they did? I'm assuming this was just a general NHS hospital lap?? Didn't they give any advice on other possible things to alleviate recurring pain, such as having a mirena coil inserted, or taking specific contraceptives that help with endo? Get you notes and letters, talk to the advisors at 'Endo UK' (link above, they host this site) and find out if they have an Endo Support Group near where you live - if so, the people there will probably know the best Endo Medics in your area. Also, if your endo was of a particular type, or in certain places that they could not treat, it may be that you need a more 'Endo Specialist' approach, than a local NHS gynae/dept can give. If you Endo was problematic you should have been referred to a specialist Endo Centre.

Sadly Endo can just come back after laps, and radical removal is not always advised when you are still so young. Talk to 'Endo UK', read their site; also, read around on here to learn more, & check out other Endo sites (eg there is a good US one and a Canadian one - and one of them has some very graphic films explaining exactly what Endo is - might help your Mum realise just how awful it is, and that it's not 'just period pains' ... which was all I got told in my teens and 20s!!). Also there is an Endo Group on Facebook that might have more info.

I would also ask your GP's receptionist for copies of all letters, blood tests, operation reports etc. This is your right, but there might be a small charge as they are not that recent. Sadly, Endo is one of those conditions where - often - we have to become our own best experts.

Take care, treat and cosset yourself, but Meamwhile become a pro-active 'Endo-Warrior'!!

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I am sorry you are suffering so much. It always breaks my heart when someone so young is in so much pain. At least i had relatively normal cycles till my late twenties.

Like grittyreads said, sometimes we have to become our own specialists and advocates. If you are in the UK, make sure you are being treated at a bsge center. I have read time and again that only they are equipped to treat endo.

If you are willing, try the endo diet. It basically says you can have no gluten, diary, sugar, caffiene and alcohol. I know it sounds very restrictive but you can start small (maybe give up gluten or processed sugar) and see if it helps. For me, it did not help with my pain but it did help with my tiredness so worth a try. Keeping a food diary can be helpful too. If exercising is painful try gentle yoga. Moving your body can be helpful one way or the other. Also maybe buy a cheap tens machine and see if helps.

As far as asking for help is concerned, it is really admirable that you want to take responsibility for yourself but don’t torture yourself over it. I know family sometimes really does not understand but there is nothing much you can do about it. Maybe take your mom to your next appointment? Send her some links about endometriosis? But ask for help if you need it, there are no prizes for suffering. Maybe once you figure out a solution for your pain and are back in your feet, you can give her back the money.

Also, as far as being positive is concerned, i read david burns book called feeling good. It is based on cognitive therapy and has many techniques for dealing with depression. It really really helps me. If you havent read it, give it a try. There is a good summary of it on reddit. If i find it, i will send it to you.

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Hunny I could not relate to this any more!!! It’s so so hard and nobody understands the pain! Feel free to message me if you need to lovely. Sending so much love and hugs to you xx

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