Fed up and Exhausted: I have stage... - Endometriosis UK

Endometriosis UK

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Fed up and Exhausted

Lily1986
Lily1986

I have stage 4 endometriosis, I’ve been signed off work since December with daily pain which increases with sitting.

I’ve had four operations including extensive excision. My whole pelvis including bowel, ligaments and pod are obliterated by disease. I’ve had both tubes and left ovary removed but still this horrible, disabling disease keeps returning.

I’ve had two chemical menopause which were both awful.

I now have back spasms as well as pelvic spasms. Need to pee constantly due to nerve and bladder damage.

The total exhaustion is really getting me down, most days I’m in bed more hours than I am out of bed. I wake up still feeling exhausted and nothing helps. Even the simplest of tasks feels like an unbearable effort.

And dealing with pain is so much harder with no energy.

So fed up and just think it’s going to continue getting worse.

Already been told several times by my endo specialist that my pain will be forever so I haven’t even got the post menopause “relief” to look forward to in the future.

My surgery options have run out as further surgery will cause “more harm than good”.

But any advice mainly for dealing with the exhaustion would be appreciated.

Xxx

34 Replies
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I’m so sorry you are going through this 😭 Is your consultant an endo specialist? In my experience Gynaes are useless when it comes to endo. I really feel your frustration and feel so sorry there’s no advice I can give. How do the medical staff know after menopause you will still be in same pain? When on chemical menopause are you still the same? I hope you find a good endo specialist who can provide answers xx

Aw thank you so much xx

Yeah he’s an endometriosis specialist in Chester and very clued up but sadly by time I started being treated and advised by him (privately) It was little too late after being mucked around and fobbed off by nhs for years and years the disease had caused irreversible damage.

When I had the chemical menopause it helped me certain elements of pain but did nothing for the daily nerve damage and adhesion pain which has been caused by the disease and surgery. So was quite hard dealing with side effects of that as well as opioid pain relief.

Today’s a particularly bad day and just feeling sorry for myself and that I’m wasting my life laid up in bed.

Best wishes to you xxx

This disease is so awful and unfortunately you won’t be the last to be fobbed off by the NHS gynaes. More must be done about how we are all treated like lying drama queens!! It makes me so mad that you have paid the price for their attitude 😡 I think you are entitled to feel sorry for yourself, but I can only give you tips on when I was down before my op. I read lots of books, got Netflix, played video games and did puzzle books, anything for a distraction! I’m sure you know all these, have you thought about taking up a new hobby like cross stitching? Please don’t get down and let the evil endo win! Keep smiling and try to think of the positives (I know that’s easy said than done) science is getting better every day, I hope more can be done for you 🤞🤞 xx

Thank you for your lovely message I really appreciate it and your advice.

Video gaming is something I haven’t tried but a good idea and think I may invest, I used to love playing the sims and crash bandicoot lol.

Feeling a bit better since my last nap but It’s so tempting to just lie here until tomorrow morning but will force myself up for a few hours.

Xxx

Sorry just reread and saw you do see an endo specialist, can you see a different one? Even if it’s in a different area, some endo specialists are more advanced than others xx

Hi

I’m in a similar boat, sort of. Waiting for hysterectomy, and getting rid of any endo. After lap discovered it was deep.

Fully understand pain when sitting, had this for over a year, activity is worse, etc.

I saw a pain specialist who suggested amitriptyline for nerve pain. If you haven’t had a pain clinic referral ask GP for an urgent one. It’s helping a bit. GP has referred to other areas as well today.

If your specialist is heading a BSGE team there should be a pain consultant available as well, speak to the nurse or secretary. If they don’t ask GP for a referral, but the consultant should have done this according to NICE guidelines.

It’s horrible to go through this. I really hope you can get something sorted very soon. Take care, pm if you want to.

Aw thank you.

I’ve been referred for pain management on nhs but only recently. How long was wait for your appt? Have you found them helpful?

I’ve got pregabalin, I think it is helping the nerve pain a bit but not enough lol.

Best wishes to you xxx

Moon_maiden
Moon_maiden in reply to Lily1986

The initial referral got screwed up and I found they'd only sent a question through the system, I ended up seeing him privately. The referral then went through when I received a text from the surgery to say they'd heard from the pain clinic and I've been referred internally to psychology and physio! I was livid and made them quite aware of that as well. I requested a copy of the referral, they still haven't sent me, I know they are avoiding it becuase they probably sent a load of crap. No one is really sure of the extent and due to have hysterectomy and he'll have a good look. First consultant felt it in the bowel.

The consultant was really nice and empathic and when I spoke to the secretary (NHS) on the friday he called me back on the Monday, it was amazing. Incresed from 2 to 3 each night. They may suggest nerve blocks. I came across a pain management article which described to a T and that person had nerve block which helped. Spent a fortune because of GP surgery. I'd advise anyone to check on status of referrals these days.

Lily1986
Lily1986 in reply to Moon_maiden

Oh my god, this is awful! How dare they? Very few medical staff actually understand exactly how painful and serious this disease can be. Or if they did, you’d like to think they’d be a bit more caring and thorough. It’s awful!

I’m so sorry you’ve had this experience on top of all pain. Also don’t give up getting a copy of the referral from the gp, they’ve definitely made (another) mistake and should make an interesting read.

Are nerve blocks injections? That sounds like it would help tremendously!

Best wishes xxx

Moon_maiden
Moon_maiden in reply to Lily1986

I took the article in for that reason, but they like to try other things first, as you’ve done all of that hopefully they’ll be sympathetic to you 🙂, yes they are injections.

Best bit when I went in, the receptionist called my DOB across the room and I politely told her not to, it wiped the smile off the other persons face, 🤣

Trike3
Trike3 in reply to Moon_maiden

Hello MM. Not sure if you are aware, But every patient is entitled to access their medical records. My practice uses.

systmonline.tpp-uk.com

It should not be a question of “avoiding” your request, so perhaps a word with your practIce manager might resolve this. I know you shouldn’t be put in this position when it’s hard enough to manage it when well, never mind when your so worn out & worn down by Endo.

I’m sorry I can’t suggest more, well, I’ve rediscovered my heat pads In the last couple of weeks & they have been of some help. My cats think they’re brilliant too.

Good luck going forward, I wish you well & hope you continue to improve, if only by baby steps.

Sx

Moon_maiden
Moon_maiden in reply to Trike3

Many thanks, Iv’e had them a couple of times in the past as well as hospital. It’s annoying as I used to see them on the system and EMIS have had issues. They really don’t want me to see this 🤣.

Your story is heartbreaking to me and if im honest scary. I have recently been diagnosed with stage 4 bowel endometriosis and im desperate to get my 1st surgery out the way. My surgeon said i will need 2 surgeries in total. Hes already told me i may lose one of my tubes and i will have to have a bag for 3-6 months. Its all so scary cos the longer they leave it the worse it gets. I also would recommend reading or even writing down your story as it can help others. I also enjoy poetry and spoken word. Also prayer is powerful 🙏🏾

Lily1986
Lily1986 in reply to Endo_enemy

Hello.

Thank you for your lovely message and advice - I really appreciate it.

I am so sorry for the horrendous pain and worry you must be experiencing too. I really hope you don’t have to wait much longer for your first surgery. Have they given you an idea of time scale?

Good luck and best wishes to you xxx

Endo_enemy
Endo_enemy in reply to Lily1986

Thank you for responding back 💛 No time scale from my endo consultant but i made a connection in surgery admissions and there is a chance i could have the surgery by December, but its only if the surgeons take their finger out and agree a date. Cos i have bowel endo i need a gyne and bowel surgeon to be present, it just prolongs the whole thing. With the fear of another lockdown im just praying to get my surgery in beforehand. xx

Hi, I am so sorry to hear how awful you are feeling.

My symptoms are very similar to how you have described yours. Sitting is a nightmare for me too.

The worse the pain, the more fatigued I feel, I guess our bodies can only take so much.

I find using a tens machine can be very helpful, it improves my pain a little although it's not the most practical thing to wear all day.

I really hope that you find something that works for you. I am only at the beginning of my journey so I am sorry I can not offer too much advise, my heart goes out to all of you ladies that have dealt with this condition for years x

Lily1986
Lily1986 in reply to KatyLB

Aw thank you for your message.

I will invest in a tens machine, I don’t move much so should be able to have it on constantly haha.

That’s a very good way of thinking about the pain though, I never really think of how much my body can take and am always longing it to do more for me rather than letting me down all the time.

Feeling a bit happier today but looks like it will another day in bed.

I wish you the best of luck with your treatment and hope you get some relief from pain soon xxx

Hi, so sorry and totally understandable that you feel that way.

There are many things that may help with fatigue such as B12 but don't take too much as it can cause anxiety. Ashwaghanda is good for boosting mood and energy too. If you take it at night it can help with sleep too.

Can I suggest that you find a good acupuncturist in your area that specialises in endometriosis. Traditional Chinese medicine specialists are far more effective at treating endo then

Western docs. They may be able to reduce the endo in the body via herbs or acupuncture and hopefully reduce your symptoms too

Please look into pycnogenol (30mg twice a day). Takes a month to start being effective but studies have shown it reduces period pain by 30% at least. It should help with daily pain as it is caused by endo too.

Serrapeptase is worth looking at too. Always start on the lowest dose to see how your body reacts to it. Some women have found it reduces operation scar tissue, reduces endometriosis/endometriomas/ dissolves fibroids

endo-resolved.com/serrapept...

I have stage four endo with bowel involvement and these chinese herbal plasters are fantastic at reducing high pain levels down or to nothing. Just place on the affected area and don't leave on for more than 12 hours.

amazon.co.uk/dp/B07H4NQD3L/...

I hope some of this helps and will post again if I think of something else x

Lily1986
Lily1986 in reply to roshsp2012

Oh my gosh, this is so interesting and extremely helpful.

I had never even heard of most of these things and will be trying every single one.

Thank you so so much.xxx

My heart goes out to you, I have fibromyalgia as well as endo and the fatigue really wipes me out. Distraction seems to help me, like whats been mentioned in other posts. Netflix, reading, jigsaw puzzles. Ive tried diet changes, and vitamins but nothing much helps. Im seeing a physio at the moment that thinks my back/hip pain is nerve damage from my 8 surgeries, and now I've suspected bowel endo that they may need to operate on.

This disease robs us of so much, im trying to read self help books to help with my mental health, Im not sure if we can mention books on here but there's a new one at the top of the charts at the minute that I have found helpful.

Sending healing thoughts your way.

So sorry to hear of your terrible ordeal!! My Dr put me on Visanne, which helps with inhibiting the growth and also helps with the moods due to the surgically induced menopause. Maybe ask your Dr about it?

All the best xxx

Lily1986
Lily1986 in reply to EndoZee

thank you 😊 I have heard great things about Visanne, my Italian friend who lives in UK gets it sent over and has said how much it has helped her.

Are you in the uk? Did you go privately to be able to get it? Xx

EndoZee
EndoZee in reply to Lily1986

Hi, I live in South Africa. Yes, my Dr has to prescribe it.

x

Bless you. It’s such a debilitating and lonely disease. Just wanted to say we understand. It’s not an easy thing to describe. So many people are ignorant. Drs are pretty clueless and all mine think about is their budget. I’m a 58yr. Got stage 4 Endo. Hysterectomy at 32. Had continuos pain since, hrt fir 20 yrs which has fed it, seen consultant private, best thing I did. On waiting list for excision, but god know when that will be. Think it’s 2yr wait for a laparoscopy now. I will go private fir that if necessary. I can’t give you any answers. Just take advantage of the good days. Listen to your body. Don’t overdo it. Here for you if you want to rant. Best wishes xx

Lily1986
Lily1986 in reply to Gwen172

Hello.

Thank you so much for your message, it means a lot.

I’m so sorry for the long struggle you’ve had to deal with.

Did you find it got worse after your hysterectomy? I just ask because my consultant says this is the only option left but has strongly warned it won’t cure it and could well make things worse (if that is even possible)

It makes so much of a difference going privately doesn’t it? Wish I’d done it years ago just to be taken seriously.

Can’t believe it’s a two year wait for excision now. I hope there is a way to speed it up for you. Awful that we have to resort to going private but I’ve a feeling that is what the future will be for everyone who wants decent treatment for any condition. Such a shame!

My last excision was almost two years ago but because it’s on my bowel it keeps coming back. So frustrating.

Best wishes to you, I will follow you on here so can communicate and follow your journey Xxx

.

Gwen172
Gwen172 in reply to Lily1986

To be honest, the hysterectomy made no difference apart from the obvious. At my 6 month check up I said that I was still in the same amount of pain. It’s just got worse over the years. I’m not really a good example. Maybe some do get relief but sadly nit me. I’m interested to hear about your excision. I was told it would be 4-6hr op and it’s brutal. Those are the consultants words nit mine. I’m going to push for a lap first so I know what I’m dealing with. Although,he did say there was no point as he knew the surgeon who operated and he wouldn’t have gone looking for it.

I’m going to be the oldest one on the ward. What are you taking for the pain? I’m on pregabalin. It’s for the nerve endings.

Hope you had a good day pain wise. Mine is bad at the moment. It affects my mobility as it’s sciatic pain.

Take care, and message anytime xx

Hi Lily. Sorry to hear about your pain. We all seem to be on the same boat here. I can totally relate to most of what is being said and especially about us being "Drama Queens" or overplaying the pain or fatigue. I guess not all can relate to what we go through and I'm glad for the support on this site as we all relate. I have stage 4 Endo and still trying to make the tough decision of having a complete hysterotomy.

I'm note sure if Visanne is available in your country but it helps me a lot and on days when the pain is bad I would recommend ibuprofen 400mg. You may get Nurofen for period pain but I get the generic ibuprofen or grab any pain meds I can get my hands on lol especially for the back pain which has been frequent the last month. What I also find helps with the fatigue is having a monthly injection of neurobion which includes your Vitamin B's also acupuncture as mentioned in the comments . I drink half a teaspoon of tumeric powder (yellow spice mostly in indian cooking) in water that I mix as I wake up or even for the early morning trip to relieve the bladder. Tumeric is an anti inflammatory. It does increase the estrogen so please check if you are able to have it if you consider.

Wishing you all the best and feel better soon.

Lily1986
Lily1986 in reply to HopeGP

Thank you very much for your message.

It is very helpful and I will definitely be trying your recommendations.

I’m going to investigate visanne as I keep hearing/ reading good things about it. Whereabouts do you live? I wonder if I can get it privately in uk.

I’m so sorry for your pain and suffering too. Does your lower back like feel really heavy and achey and then if you stand or move in wrong position for a second too long cause it to spasm? It’s horrible!

Best wishes to you xxx

HopeGP
HopeGP in reply to Lily1986

Thank you for your response and it is my absolute pleasure:-) I live in South Africa. Visanne has been amazing and I can't go a day without it. Made a huge difference in my life. It stops the period as well.

My back often pains, sometimes the upper, lower or in-between. It does ache/burns if I am cooking, doing dishes sitting at chair working or even on the couch etc. I sometimes have to go and lay flat on the bed for a minute or two and get cracking again lol. I was an overly active person and now I am like a 80 year old that at a certain time of the night I just need to be lying on the bed as it's the only place that I don't feel so bad. The hot water bottle and electric blanket also help oh and we have a patch called "transact patch", these are also quite effective. Some days I wake up and can take on the world and other days I can't even lift my head to lay on my husbands chest or turn to face him as my back is locked or in spasm. Because of trying to stay in one position I've also been giving myself a stiff neck and sore shoulders. I never knew a stiff neck could be so painful. All these pains are horrible :-(

Best wishes to you too.

Hi there,

So sorry to hear about your horrendous experience.

My mum lives with 24/7 chronic pain, for other reasons, with no light at the end of the tunnel (except for her faith in Jesus, giving her hope of a furure with no suffering).

I just wanted to add my voice of support along with all the other lovely ladies' words on here.

Thoughts & prayers with you xx

Thank you so much for your kind message, I really appreciate it.

Best wishes to you and your mum xxx

Hi,

I feel your pain, frustration & exhaustion with it, I’ve had a tah & another diagnostic laparoscopy & pain returned again.

I’m now a bit better as I can now reflexology & reiki which helps the symptoms & pain hugely, I now also have started Pilates to try & help as I’m so stiff & ache so much, also trying Cbd oil rather than constant taking tons Of really strong pain killers & that don’t always cure it, even Orimorph & I’m relieved there’s been some let up & improvement which then helps my fatigue, mental well-being & zest/energy.

I understand how you feel, have you tried to see a female Pelvic physiotherapist As surgery isn’t always the sole cure for this debilitating disease!

I’m not saying this is the answer but just other avenues or options to try?

Have you also tried CBT? I’m due to soon, look after yourself & try things that relaxes you & you enjoy?

I really hope you get some relief soon 🙏.🤞🤞

I am so sorry for what you are going through. Yesterday, after 11 years of pain and not being taken seriously, I finally found out through my MRI results that I also have stage 4 endometriosis on my bowel, bladder and right ovary. However, unfortunately because of Covid, my surgery most likely won't be until next year. I noticed you said you saw a private specialist in Chester and was just wondering if you would recommend him? If so, is it possible to name him? I am new on here, so not sure how it all works! xx

hi. Endometriosis is awful ☹ , I also have stage 4 deep infiltrated endometriosis, with various complications.

I can only go from personal experience but a few suggestions

push the pain clinic referral, I found I was taking the pain killers wrong and after a few weeks saw an improvement in my control of the pain. I also found that some of the medication was actually irritating my bowel endometriosis and it had become a vicious cycle till the medication got changed. Amittiptline took some adjusting to but really helped with the nerve pain so might be worth exploring.

heat really eased pain especially during flare ups and some yoga positions eased it to.

have you tried the Endo diet? I thought my husband was clutching at straws with this but for me it really helped, I stuck to it for 6/8 weeks and then gradually introduced different food, for me pasta, certain bread, pizza, some cakes and anything citrus is a no go, I'm quickly in pain but obviously this will be different for everyone.

magnesium and zinc is a good supplement for tiredness according to the endometriosis nurse I had the pleasure of being looked after by.

a friend has stage 2 and finds acupuncture and reki helpful but it didn't do anything for me.

be kind to yourself and rest when you need to, I was brutality honest with people about the pain I was in and when I did finally get the amazing specialist and surgery he couldn't believe the mess he found and how id managed for so long.

take care and I hope you find something that helps. Xx

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