Advice needed - Am I losing my mind - Endometriosis UK

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Advice needed - Am I losing my mind

Amber83
Amber83
20 Replies

I’m writing this as I’m really struggling, I feel like life is not worth living. And I don’t know what to do.

I’ve suffered with anxiety since I was young, growing up my periods were regular but painful. I had combined pill which gave me migraines so I switched to copper coil and over a few year my periods got bad. Pain and extreme fatigue took over. I went to the doctors over and over and told it was just my anxiety with heavy periods. Fast forward a few years and I pushed for laparoscopy where I was diagnosed with endometriosis. The whole thing was a massive struggle and it made my anxiety worse. I was pretty much bedridden with pain and eventually got excision surgery two years ago. I fell pregnant and now have a 1 year old.

The pain has crept bk, first just at period time, now at ovulation. And major fatigue, I feel ill pretty much everyday, I can’t cope. I get headaches, acne, hot flushes, no sex drive, bad stomach which has me on the toilet all the time. I have a baby to look after and I feel like I’m not capable. I’ve seen Endo consultant who said he’s not sure if it’s bk and another one who said my pelvic floor is tight maybe from traumatic birth and that I’m so tense so that may be the cause of pain. I’ve had blood tests which show nothing. I get a low heart rate which they say is nothing. Every time I stand up I feel I’m going to faint which they say is nothing. I’ve been extremely stressed for years with no one believing me and I can’t do it anymore. Is this endometriosis or anxiety, I don’t know anymore. I don’t know what to think or how I feel, I want to give up! But I can’t as I have a beautiful girl to look after. Please anyone if you have any advice ? X

20 Replies
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Boodie

Hi there, I'm sorry your in this situation. Have you seen a councillor about the anxiety and do u have a partner of friend or family member to support you?

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Amber83
Amber83
in reply to Boodie

I’m seeing a psychologist, I have a partner and supportive mum. But no one understands. The psychologist has arranged an appointment with psychiatrist as he doesn’t feel all these symptoms are down to anxiety. But my doctor does x

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Hopeful82

Sounds like your anxiety is being heightened by the endo and endo can be aggravated by stress so your in a vicious circle rather than it being one or the other. Things I find help for pain-

Frozen peas

Tens machine

amatriptaline 40mg at night

Have you been referred to a pain clinic? You could ask your gp to do this.

For anxiety-

Try-

Mind

Youngmind

Liveitwellkent

Time to change

Try and do something for yourself each day, a little thing - a little walk, light a candle, have a friend round, write in a journal, do some mindfulness colouring, observe nature, have a relaxing bath, look at old photos, bake if you can.

I work in mental health and am an endo sufferer so hope this helps a little.

You can private message

me if you like 🌻💐🌻

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Amber83
Amber83
in reply to Hopeful82

Do you think it’s a mixture of the two causing the fatigue/ill feeling/no energy feeling. I feel like if I could tackle that it would make things easier.

I’ve tried walks, I use headspace meditation app, hot water bottle but I just feel like doing things takes it out of me even more so I try to use any bit of energy for looking after my little girl x

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Hopeful82
Hopeful82
in reply to Amber83

The fatigue, no energy is the disease. The ill feeling is your anxiety made worse by the disease I would say. Can you get your medication reviewed? Once I found the right medication for me I got my life back. Specifically for tideness , this medication helped loads which I don’t experience anymore since taking this, and before it was very severe , I take the qlaira . Take care

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Amber83
Amber83
in reply to Hopeful82

I’m not on any medication, it feels like most things I take my body just says no. I tried Provera a week or so ago and after about 2 days I had really bad cramps and a bad tummy. X

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Hopeful82
Hopeful82
in reply to Amber83

I would whole heartily recommend you try some different medication. If I come off my meds I become bed ridden so if you find good ones they will change things it can take a while. Took me over a year and a lot of research and trial and error to find what works for me. No meds and endo are pretty much a no go for most. Are you in the uk? Can you ask your gp to refer you to your local bcg centre? The other medication I found helps is amatriptaline , it stops nerve receptors receiving pain so limited or no need for strong pain killers 😵😵😵 works for me 👍👍👍

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Amber83
Amber83
in reply to Hopeful82

I’m already with BSGE centre in oxford, that’s who prescribed the Provera and I don’t have a specific consultant to contact. I’ve had to badger them to get what I have got so far. They won’t give me the combined pill because I get migraines. Maybe I’ll do some research and see what I can find. X

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Hopeful82
Hopeful82
in reply to Amber83

Glad your already at a bsge centre already you can ask them to refer you to the pain clinic. They will do a full assessment and hopefully be able to help you more. Ring the clinic and ask for the endo nurses number/ email I got a lot of support from my endo nurse at guys when things where desperately bad for me

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Hopeful82
Hopeful82
in reply to Hopeful82

Ps your gp can prescribe amatriptaline so don’t need to wait for consultant. If you try them let me know how you get on x

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Tilozherely

Hi Amber, First of all, You are not alone... and I am so sorry to hear what you are going through. I know this is long, but I hope you find some answers...

I had been on and off different contraceptive pills to manage migraines and balance my periods since 1997. My daughter was born in 1998, and after a failed marriage I was on my own. Following years of chronic fatigue, low mood, and unbearable migraines twice a month, period and ovulation, I got some special hormonal tests ordered by my GP in 2005. They revealed I had severely unbalanced hormones. My estrogen and cortisol were sky high, and my progesterone and testosterone were nearly 0. I was ordered off all hormones, and after a few months my anxiety subsided, energy began returning, and low moods evened out. Despite still having migraines, I was feeling a little better and more able to cope. In 2007 I was diagnosed with a CIN4 and had a Lletz surgery near Christmas of that year. I had 2 more daughters in 2008 and 2009. I felt really good while pregnant, no migraines and really energetic... but after having the babies I began feeling terrible again and the fatigue returned... so in 2011, I saw a hormonal therapist who put me onto natural progesterone cream (specially ordered)... this reduced some of the migraine pain I was getting and helped with the fatigue. Then in 2014 I had excruciating pain in my abdomen, the doctors said it was a hernia. Nothing showed up on the ultrasound. I allowed the doctor to keep insisting it was just a hernia, even after a huge lump had formed outside my belly button the size of a large marble, 6mths later. In 2016, I was in so much pain during period and ovulation time, and then the lump began bleeding. I changed doctors... he immediately told me it was endo, and a week later it was excised. But, 6 weeks later it had grown back. This time internally and the same size as before. I had to go on a waitlist. During that time we moved house 100km away from my GP, and I was fortunate to find another who understood rare endo. 6 mths wait, and I went in for surgery for the 2nd lump removal. I was out of commission for 2mths, could barely walk. But it grew back again, and worse still we moved again... I have since seen 4 doctors, 3 of which did not believe me. One told me I was just overweight - I am a size 34 waist and 5'7... My migraines and exhaustion are unbearable. But I was fortunate to find a doctor who got me on a specialists waitlist for endo. I had that appointment last month. And sure enough, the endo is back, BUT it cannot be seen on ultrasounds. Only MRI. I have never had a laparoscopy either. The type I have is seen in less than 6% of endo cases... but it DOES EXIST! NEVER let anyone tell you it doesn't. If you feel unwell and you know something is up, go find a doctor who believes you. I took with my studies, reports, research, and even other forum stories from women with similar symptoms. I have 2 lumps growing under my armpits size of golf balls, also endo, several pea-sized lumps scattered around my abdominal wall, and a few spots in the muscle of my upper thighs near my pelvis. But none in my reproductive organs. Yes, there is a lot of pain each period and ovulation. But at least I now know it isn't in my head.

Amber, I just wanted to share with you how a different story can lead to some answers that might help. Perhaps you are hormonally sensitive too... in that case, any synthetic hormones might not be good for you... including the small amount in Mirenas. Do some research on xenoestrogens... if you are sensitive you could be absorbing more than your fair share throwing all your natural ones out of whack. Low mood is a sure fire sign of too much estrogen. As is endo! Endo grows with estrogen.

We, women, are in this together... we are here to help each other, to support and enable each other to get through this so that we are NOT alone.

Good luck chickadee... know that you have friends here. Go be that beautiful momma you are AND find a doctor to support your needs because YOU know your body better than anyone else ever will. xx

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Amber83
Amber83
in reply to Tilozherely

Thank you for taking the time to tell me your story.

I’m not on any hormones, everything I try with hormones makes me more anxious and causes other symptoms. I recently tried Provera tablets for a few days and had the worst cramps, diarrhoea, and since stopping them I am really down. It feels like I’ve got nothing left in me to keep trying.

My hormones don’t feel like they have settled since having my baby a year ago xxx

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Tilozherely
Tilozherely
in reply to Amber83

Hi Honey, All the tips here are worth trying. Yes, it sounds like you have a lot to deal with and perhaps that is part of the issue - you are trying to DO TOO MUCH. If possible, can you reduce your workload... is housework necessary all the time? Stop discounting yourself - you feel tired, and that's ok... it is also normal for someone with as much to do as you have. Never compare yourself to others, or listen to anyone telling you that you should be able to cope. Everyone is different. You are entitled to be different too! xx

With very little effort, doing these few things can really bring your energy back in about 2-3 weeks. It is worth a shot, right?!

Don't give up - your life is precious and valuable, and you deserve to be here on this planet like the rest of us. Your gift to this world is YOU. xx

With endo can come the issue of adrenal fatigue at the worst end and of course chronic fatigue at the other. Yes, I concur, getting back your energy levels can help you cope and deal with life. When my girls were 3 and 4 y/o I went back to uni full time and worked a part-time job. I thought my lack of energy was because I was doing too much. turned out it was Adrenal and Thyroid. I was only ever so slightly sluggish thyroid by the tests, but I insisted that I wanted to try the Thyroxine, and it pulled me out of the adrenal fatigue issues and helped with energy levels.

Also, I tried DIM: it detoxes the estrogens in your body (reducing their levels which cause depression, weight gain, headaches, and endo) - especially xenoestrogens which elevate our usual levels (from the environment, paints, deodorants, soaps, etc). DIM is derived from broccoli, each capsule contains the equivalent of 30 heads of broccoli. Amazon sells a few brands of this: amazon.co.uk/Natures-Way-DI... But it works fabulously for reducing estrogen without adding to your burden.

Decreasing your estrogen can help with lethargy too, and reduce the estrogen which causes endo and cancer.

Either way, you have a baby, juggling housework, and a job. That sounds like a lot who is struggling with their health as well. Also, post-natal depression can kick in about now, not always right after having the baby. This can exasperate the feelings you have on top of the endo. I have done the diet things suggested by others here - cut back on gluten, and switched out my milk to almond, rice or coconut.

I also learned how many hormones are in meat, so I cut back on that too. But other issues with energy can arise from not enough of certain amino acids we naturally make - like Taurine, and Acetylcholine. I take both to supplement what my brain and body aren't making. There is no test for this, it is trial and error. This one is a combo, but has lots of natural energy boosters in it: amazon.co.uk/Brain-Booster-... But there are lots of other ones out there too... try looking for 100% authentic powders like this one: amazon.co.uk/BULK-POWDERS-P... and this one amazon.co.uk/BULK-POWDERS-B...

Just as a disclaimer, I do not advocate for any particular product nor do I represent them. This is just my experience, and the links point to examples of products I buy myself.

Hope this helps Amber. Remember, it is worth a shot, right?!

Don't give up - your life is precious and valuable, and you deserve to be here on this planet like the rest of us. Your gift to this world is YOU. xx

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Fooofs91

Honey, have you considered changing your diet around drastically? I know it sounds like the last thing you need but it really helps especially Becuase you mentioned stomach problems honestly try it my love it will take a few months but it will work try and go gluten and dairy free for a while xxx I’m so sorry for your sadness but I promise no pain is forever it’s impossible and technology is advancing they will find something beneficial xxxx

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Amber83
Amber83
in reply to Fooofs91

I have thought of it but I don’t know where to start. I can’t think anymore. Trying to juggle being a mum, normal household chores, working from home and feeling so drained leaves me with nothing left to do anything else with ☹️

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Fooofs91
Fooofs91
in reply to Amber83

I can imagine , it must be so hard but please try cut out gluten you can have potatoes or basmati rice but no more bread and in terms of dairy cut it all out have coconut milk , almond milk etc I promise it will make you feel better it just takes time diet has helped me so much I was crippled I couldn’t believe food could possibly change my endo pain I know it must be so hard but it will keep you motivated my love xx

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mwill016

Hi,

I'm so sorry you're feeling like this, and well done for speaking to us about it - that's a brave step to take.

I don't really have any advice to give that hasn't already been suggested but I just wanted to chime in to let you know we're here for you and you're not alone. Keep talking to people, keep being kind to yourself, keep on keeping on.

I struggle with anxiety and low moods too, and I'm a week into laparoscopy recovery after an awful breakup. I'm just trying to get through each day as it comes, trying to find peace and joy in small things. It is hard, and endo doesn't exactly make it easier for us, but it will get better. Also definitely buy a TENs machine - really helped me!

Lots of love xx

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brizzlebird

Amber I am sorry you are struggling. As others have said you are not alone and you are NOT losing your mind despite how it might feel.

I've started a fb group on Endo and mental health. Do join if you haven't already and you'll see you're not alone in how you're feeling. Love and strength to you x

facebook.com/groups/2158766...

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DaniahAQ

Hi Amber,

I am sorry you are going through this and feeling this way and like everyone else has said YOU ARE NOT ALONE and it is NOT in your head. Unless someone experiences endometriosis, they won't fully understand.

Don't give up and be kind to yourself! I found that this group of wonderful ladies has helped me a lot. Even if it's just to rant about side effects of the illness that I'm having that day. We are all here for you. If you ever need to talk, just send me a private message on here!!

Sending lots of positive and healing energy your way darling. Xx

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Amber83

You definitely are all wonderful ladies, reading all your replies has made me feel a little less alone so thank you all.

I have joined the Facebook group brizzlebird, I’m going to get a tens machine and I’m going to try and be kinder to myself.

I want to say I’ll listen to what my body is telling me, but I can’t understand what it’s telling me.

I’m at a loss with trying supplements etc as everything I have tried so far seems to react in the opposite way that I want it to. I wish I could find a doctor that understands hormones and gives me some magical test so I know where I’m at with hormones and maybe then I would know what to try taking or changing. X

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