How do you cope?

Hi everyone, I'm 22 years old and was diagnosed with Endometriosis about two weeks ago after surgery.

After almost 10 years of symptoms of excruciating pain and chronic symptoms I finally have a name for what's been making me so ill.

For years I've seen countless doctors, almost all downplayed my pain and illness. I was told I was depressed and anxious, sent for therapy, told the pain was imagined, told to eat more fruit, told to 'get a hobby'. Finally I had surgery that removed endometriosis tissue and treated the organ adhesions they found.

about a year ago my symptoms got worse and some new symptoms showed up. I started seeing lights and seeing things like coloured blobs and objects moving, I've also lost consciousness and had weird things happen like spasms and jerking limbs. After battling through tests for a year, I've finally seen a neurologist who thinks I have either epilepsy or an atypical migraine variant. I'm still waiting for a diagnosis for that one.

I just look back at the last 10 years and feel so angry. I feel like I lost my childhood to this disease, I missed school and was bedridden and sickly. I've been made to feel weak and small and like my pain didn't matter. Now I finally have recognition and a cause, I'm facing a lifetime of an illness that has no cure. I also feel like these neurological problems stem from endometriosis, my body has just been pushed to exhaustion from years of pain and untreated illness.

Being really sick for the past year has slowly impacted my life. My friends have all but disappeared, losing interest in me after I cancelled too many times. I've lost two jobs, my degree is suffering so I'm now having to study part time to catch up, and my personal projects (I'm a writer and performer) have just dried up, all the contacts and accomplishments I've made disappeared after being out of the scene for too many months.

Now I have a name, endometriosis, I'm suppose to feel happy? Facing a life of two untreatable chronic conditions is awful. My fertility is at great risk. The pain can be terrible, my brain is failing me, my memory is gone, my brain just gets taken over by these 'episodes' and I have an attack or a seizure. My body is slow and tired and in pain, I feel like I've just lost control. My family is happy, they think after surgery I'm cured. But I know thats not the case, there is no cure, there is just management.

I'm honestly not depressed, I think I'm just going through the natural grief process that must come with these kind of diseases, I feel like I'm grieving for a life I won't have and making sense of it. Being sick is difficult and its isolating.

How does everyone here cope with having a chronic illness and being in pain? Maybe you could share your own story?

Thanks for reading everyone xx

12 Replies

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  • Hello Kitty!

    I'm 32 years old and was diagnosed with severe endo in 2010 after years of excrutiating period pain, accompanied by back pain, pain when having a bowel movement and pain during sex which started when I was about 18/19 years old.

    Like you, it took a long time before any doctor would take me seriously. I had seen several different doctors in Canada where I am from who basically just told me I was 'cursed' with bad periods and recommended that I skip a few periods each year. I moved to the UK a few years later with my symptoms worsening each year. I saw several different doctors here as well. One doctor basically thought I was just being hysterical and prescribed me valium! I never filled the prescription. By this point I was missing work every month with terrible pain and symptoms that were still getting worse.

    I booked another appointment with my GP and was able to see a different doctor. I was angry and upset the day I went to see him and told him what all the other doctors had said and told him I had been suffering long enough and that what I was experiencing was definitely NOT 'normal'. He was so kind and sympathetic and asked if I had heard about endometriosis and FINALLY referred me to a gyne for a diagnostic laparoscopy to see what they could find.

    When I came out of anesthetic after my diagnostic lap the consultant came to see me and my husband and told me that I had stage 4 endometriosis. Honestly...I cried! I was so relieved that after all these years all my pain and suffering was validated and I wasn't just 'hysterical' or 'cursed'!!! Finally an answer!

    I was passed on to a BSGE accredited centre for endo with a wonderful specialist. For many different reasons I decided not to go ahead with surgery at that time to remove my endo. I decided to just stay on birth control back to back to never have a period. During that time though I noticed more changes in my symptoms so I eventually sought a referral back to the endo specialist.

    This time it was recommended that I have surgery to improve my pain symptoms and so that it would give me the best chance of starting a family. Unfortunately, the endo centre very near me only has one surgeon so I was on the wait list for nearly a year before being transferred to a bigger centre. I had to wait a few months with that specialist as well as they tried to coordinate the schedules of my endo specialist and a colorectal surgeon.

    Finally, nearly 6 weeks ago, I had my surgery to remove all of my endo. The surgeons and nurses at the hospital were absolutely wonderful and they say that my surgery was a success. I am now hoping to come off the pill in a few more weeks and start trying for a baby with my husband!

    As for coping, the best things have been having a good support system from my family and friends (they don't always understand but they try to!). I am scared about some things like trying to conceive and carry a baby and about even trying to have sex again. The sad thing is that I know that this will likely come back but I try to just take each day as it comes and hope for the best. Having this forum with some lovely women to talk to and ask questions of and share experiences with has also really helped.

    I hope you are doing well. Keep your chin up!

    Sassy

    xx

  • Hi Sassy, thank you so much for your reply. Reading your diagnosis story, it was so similar it could have been mine! I grew up in America so was also trying to get a diagnosis before coming to England.

    Congrats on your surgery and trying for a baby, you have obviously dealt with a lot and shown such bravery and strength.

    Thanks for sharing your story and for your advice, it really helped me.

    Best of luck with everything! It's an exciting time for you and your husband :) keep us updating please.

    Lots of love

    K xxx

  • Hi Kitty,

    So nice to hear from you and to hear that you have such a similar story to mine (as awful as it's all been)!

    Thank you so much for your kinds words and well wishes...now it's just getting the guts up to actually START trying haha!

    I am so glad to be able to share my story with others who have been/are going through this! Wishing you all the best of luck and don't hesitate to send me a message if you have any questions or just need a to chat!

    Sassy xx

  • Hi Kitty

    The one positive is that you have a diagnosis at last and that it has been made at a time when you do have access to proper treatment and can now take control of the course of that treatment. Try to hang on to that thought as you adjust to this new situation. And you are likely to have an explanation to all those weird symptoms that you have always thought were connected. My symptoms all started in the mid 80's (I am a good deal older than you!) and was bounced between gynaecologists, neurologists, shrinks, ENT consultants and all manner of others before being consigned to the 'supratentorial' wate bin. That is medical jargon for 'in the head 'just to be sure that the patient doesn't understand what is being written about them.

    Can you click on my first post on endo and its many symptoms and I think you will see yourself there as clear as day. Whilst it will be a good idea to get the neurolougical sysmptms checked just to be sure, these can all be caused by endo. My distorted vision, dizziness, brain fog, memory loss, fatigue, crippling 'nerve' pain in my head, hearing disturbances and all manner of other things ruled my life and were all down to endo. Have a look at my post on Pouch of Douglas endo as well in case you have rectovaginal involvement.

    The first thing you need to do is get a referral to a specialist centre to have your endo fully excised. Look at my post on that. x

  • Hi Lindle, thanks so much for your reply. All of your information is incredibly helpful, I know there has to be so much more to this condition then just 'pelvic pain' and one crappy rheumatologist informed me. It sounds like you've had plenty of experience with bad doctors!!

    After years of being ignored and being told its all in my head, or being told I have anxiety, depression, chronic fatigue and fibromyalgia, I am happy to finally have a diagnosis, even if it does mean I have a chronic illness.

    Thanks pointing me towards your posts, they are very helpful.

    And thanks for taking the time to share such important information with everyone, this forum is such a fantastic place to be.

    K xxx

  • Hi Kitty - I'm so glad the posts helped. Endo UK has since removed them without any explanation. I have endo behind me and had the time to try and make a difference and turn my terrible experience into something posistive. I think it is incredibly sad if such help is against some sort of rules when there is so little on offer. x

  • Hi

    Have you had your b12 and vit d checked?I felt slow last year and awful memory and these two were low,seems to be a link between this and endo just not much research.

    It can be tough and I know i can't say anything that'll make you feel better right now,this site is ideal as people understand.

    We have to carry on and not let this cruel disease beat us.

    My thoughts are with you.

  • Hi terept,

    Thanks for your reply. I have had my B12 checked, but it was about 8 months ago. It is probably worth following up with that and getting checked again, thanks!

    You are right, this site is so so helpful. Just speaking to people who understand what you are going through, reading about everyones experiences and just having some people there to listen and turn to, its so helpful.

    You are right, we can't let this disease take anymore of our lives away.

    K xxx

  • Hey Kitty,

    Sorry to hear you're finding things difficult at the moment. Anger is a totally normal reaction to all this especially when you've been asking for help and suffering a long time. Having this disease in your 20s can be, I've found, particularly isolating; all your peers seem to be able to achieve what they want to when they want to and go out whenever they like - having endo means finding ways around it to be able to do the same.

    For me this started with the onset of puberty, like a dark cloud of energy zappingness had settled on me at 9 and has since not totally lifted. At 10 periods came - crippling pain, heavy bleeding, vomiting, migraines and a general malaise that extended through the month until the next episode.

    I went to countless doctors but my hormone profile always came back normal so was never referred to a consultant. Instead I was put on the pill and ponstan. I had a codeine addiction by 14 and was then told it was all in my head and to take prozac! I missed tonnes of school and even had a social worker tell me 'it couldn't be your periods, everyone has periods' even when I said I was bleeding 2 weeks at a time and couldn't get out of bed!

    The whole experience made me very anxious and paranoid, I couldn't work out how everyone went through the 'same as me' but was able to accomplish so much more and cope with the pain.

    By my early twenties I went to college to catch up on what I'd missed at school and to head towards a degree. At 24 I was diagnosed with stage 4 endo (I bled for 18months every day before my gp would give me a referral). After 4 surgeries I have also been diagnosed with adenomyosis and have surgeries 5 and 6 scheduled. I'm doing my degree but have had to take a few years out during the course of it and had to move to a different uni to be nearer family support. I got married last year and my husband and I are trying for a baby.

    I know from personal experience that your anger and resentment over the lack of good medical care is enormous. Try and get past it, looking back only uses up your energy and won't contribute to your future. Think about what you can do now to move things on and focus on understanding your endo and what works to help you feel better so you can get the most out of your life. Trust me I know how frustrating it is to see that others without endo don't have to struggle like you do, but focusing on that and the past won't help you. So put yourself first.

    Some websites that helped me:-

    endometriosis-uk.org/

    endo-resolved.com/

    If your symptoms return make sure you are referred to an endometriosis specialist.

    bsge.org.uk/ec-BSGE-accredi...

    I think going to a support group and meeting other women with endo would really help you to feel less isolated. There are links on the endo UK site.

    Don't worry if your friends haven't been around as much, you're probably feeling very out of the loop, but all that will come back with time once you recover from your surgery - give yourself time. Maybe try talking to your mates about what's going on, ask them to come over to spend some time with you at home or doing something less strenuous like a night at the cinema.

    When you have a physical illness which causes pain and fatigue it's important to prioritise what you want to do and not burn yourself out trying to do everything. It sounds like you had an incredibly busy life before and you can't expect all that to bounce back instantaneously after a flare up of endo/surgery.

    This really struck a chord with me:-

    butyoudontlooksick.com/arti...

    I'm sorry endo has affected your degree too. But it's fantastic you are continuing with it even if part time, you will get there! I hope you're getting help from your disability office at your uni to facilitate any help/adjustments you need. You are entitled to disabled students allowance (pays for Internet/printing/equipment etc) while at uni in the UK. If you are really struggling and can't work at all you may be entitled to disability living allowance etc. but it would depend on the severity of disease etc. I'd ask for advice at your local social security office. It might help to go down this route even temporarily if you can't work and the stress of this is making your condition worse.

    Again don't worry about your creative pursuits stalling for a while, you will be able to get back into all this and pick up the contacts once you're feeling better and have your endo managed.

    I'd talk to your family as well as your friends to educate them about endo and the affect it is having on your life. Of course there is every chance that after this surgery symptoms could take years to return - give yourself a few months to recover and see how things go. I completely relate to the grief process you're going through in missing out on the life you wanted to have. I had wanted to do a job that was quite physical and am now having to reassess things. We got married inbetween ops and had the additional stress of coordinating endo into our plans, and now even though we're really happy trying to conceive there is still pain with sex and my husband is working a 70hr week to look after both of us.

    None of it is easy but everyone's journey is different and you find ways around it to enjoy life!

    What I'm doing

    - Getting back into a normal routine no matter how tired/sore I am

    - Beginning to follow the endo diet cutting out eggs, red meat, eggs, dairy etc. (see endoresolved website)

    - Swimming

    - Acupuncture - a friend of mine who is younger than me, after 10+ ops and being jacked up on morphine and a tonne of drugs froom she was 17 tried acupuncture, she is now drug free!! So I'm giving it a go soon.

    - Support group

    - electric heat pad and massager

    - Asking for help from family and friends when I need it, being honest with them helps and you'll get a lot of support. Some will still be ##### but #### them!

    - Being patient with myself and realistic

    Hope all of this helps you xxx

  • Hey Applebird,

    Thank you so much for your post. It was incredibly helpful to read and so thoughtful.

    Our experiences are very similar, so to hear how well you've coped with this illness is really inspiring. I too got my periods young and became very ill, it felt like a black cloud descended over my life, taking my childhood away. I also had bad depression and anxiety, I was unable to understand why I was so ill and why all other women were 'fine'. This really shook me and made me question my sanity and my self for so many years.

    I can't believe how bad your bleeding was, I've rarely bled that much and for that long. Thats just terrible, I'm sorry you had to go through that for so long.

    You are right, focusing on the past is not helpful. Your personal goal list is really inspiring, I plan on making my own and sticking to it.

    Now its time for recovery (physically & mentally) and taking small steps. One thing being ill has done is put my life into perspective and shown me what I want and what I am grateful for, so when I accomplish something it feels wonderful because I've had to work twice as hard to get it.

    Thank you for those links, the 'you dont look sick' website meant a lot to me! I've shared it with my close family and friends and let it to the talking for me.

    I am also going to give the endo diet a try.

    Huge congrats on your marriage and trying for a baby. I'm so glad to hear that! Its an exciting time for you both. Keep us updated :)

    Thank you again for taking the time to make me feel better, this forum has introduced me to some wonderful people and has really helped me get on the road to recovery. Thanks for sharing your advice and your story

    K xxx

  • No probs Kitty, I really related to what you were going through and how it affects you when you're young.

    I hope that now nearly a month after your surgery you're beginning to feel better and getting to do more of the things you enjoy. It's great you're going to focus on your goals to get what you want and improve your health - no matter how bad it gets with endo there is always a way back to you - don't let it win!

    Fab fab news that the link helped to explain things to your family too.

    *Hugs* xxx

  • Hi kitty

    I hope you're feeling a bit better today. Having a chronic condition and being in pain is hard but we all understand on here. I find there isn't many ppl that know what endo is let alone how I feel at times.

    I'm 34 and been in pain since 15yrs old,finally had to have hormones stopped as it's gone to diaphragm and kidney so it'll be hysterectomy next. I just try to keep going and do as much as I can. I won't let it win ha ha. Though some days I feel like letting it.

    Worth getting another check of b12 though I find the endo itself can be tiring huh. I joined a support group other day from my area,are you in one?

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