Sick of waiting

I am so sick of waiting i have been on the waiting list since January 2022 for a hysterectomy and have had no news of any dates yet and the average is meant to be 18 months, now I am actually considering taking a loan out to go private which I never thought I would consider but it seems like the only option at the moment. I notice that the consultant I am under does private work as well so not sure whether its worth inquiring about the cost. Zodalex is affecting my moods so much and it is starting to mess up my bloods, fortunately my blood pressure is still normal but I'd much rather be off it. Its whether its worth it to take out a loan and then pay it back afterwards. I can't believe i'm even considering this.

[Awwy]

Hi Cloverwolf

Hang on in there. I was listed two years ago too and I am still waiting.

I always take the motto patience is a virtue. It feels forever.

Take this time and use it to mentally prepare for it. Emotionally get yourself ready.

Pamper yourself and relax as much as possible. That's what I decided to do.

Wish you all the best. 💜

[Hidden in reply to Awwy]

Two years? That is just terrible that doesn't seem right. Patience is good but at some point I think you might need to fight because it shouldn't be two years. If I wait another year I am scared of what I might do zodalex has really affected my mood to the point where I feel suicidal mum doesn't believe me though. It is not possible to relax when I keep thinking everyone would be better off without me.

[Awwy in reply to Hidden]

Hi Cloverwolf

The world is a better place with YOU in it. I know you feel low. Have you spoken to your GP or sought and talking therapy with someone?

Samaritans helpline is 116 123 and is free to call.

You need to talk to someone about this ASAP. You shouldn't be feeling this low. Has Zoladex made you feel like this?

It's difficult for family members and friends who don't experience this to truly understand. Thats why you have this group on here. They are brilliant and very supportive.

I've struggled with my mental health for the last 10 years so can really relate. Please reach out message me if you want to. I'll be here.

Its been this long for me because I switched to a different waiting list at another hospital because the first one I was with were useless and not giving me the advice and support I needed. So I knew it would be a longer wait. Having said that when they did my laparoscopy in October last year they have put me down in the priority 2 list.

How complex is your endometriosis. Sometimes you can ask your specialist to put you on a cancellation list. So if someone cancels then they can ring the next person up. Depends on how complex your surgery is though.

You are a warrior. You are not alone.

Let me know how you are doing. 💜

[Hidden in reply to Awwy]

Yes the GP knows have been referred for talking therapy but that is taking ages as well. I think it's fairly complex as they said I need two consultants for the surgery but I'm not sure of the details or stage I was never informed other than it's best for you to have a hysterectomy I'm sure I asked questions last January I just can't remember. I am on the cancellation list but I doubt anyone would cancel.

[Awwy in reply to Hidden]

Hi

If someone's pre-op results were not right and surgery couldn't go ahead they would go to that list.

I ended up going private after waiting ages for NHS. Mind is great too. I had CBT through them. She kept me on for 8 months, which was good as previously I was told 6 sessions

Ask more questions. Why a hysterectomy? Who will be the operating surgeons and how many have they done?

Ring up secretary and ask.for appointment to speak to condultant

Do you have any reports. I always tell my docs to give me a copy of all letters and reports.

Take care 💜

[jay1x in reply to Hidden]

Hi, I am sorry to read your plight but be careful going down the private route. A consultation is approx £250.00 without any tests if required. Also the fee for the op is normally the operation and a follow up appt. If further appts are required post op they will be charged as extra. I went private as got desperate not for the same op, but I had to have another op after the initial op. I did not take into account and cost me dearly. I can understand your reasoning for wanting to go private but make sure you have a clear understanding of the costs. It will be expensive, and even more annoying that the consultant you are paying is generally the NHS consulant.

[Katiahead]

I understand. I am 16 months into a 42 month waiting list after finally getting someone to diagnose me with Endo after 15 years of gp appointments. I have a 10cm and a 15cm mass on each ovary. I'm in constant pain and can barely control my emotions. Sending you hugs and positive thoughts ❤️

[Rocket14]

Hello my lovely, I'm on a private waiting list for a hysterectomy and it could be 10 months wait. I'm also on zoladex and yes my moods are low at times. I'm lucky to have private health care through work. Most health insurance companies won't support preexisting issues. I know its hard but try not to put extra stress of a loan you have enough to deal with.

I having CBT therapy and its helping me understand how to try to think differently when I'm struggling. It's been hard as my OCD and anxiety are high atm but it helps. It also helps to talk to someone you don't know at times.

This support group are amazing, I don't comment very often but I wanted to reach out to you.

[Jingles11]

Hi Cloverwolf

I was in exactly your position, I was on the waiting list 7 months with no NHS op date in sight, the Zoladex didn’t agree with me it didn’t stop my massive blood loss and pain. I was in a declining physical and mental state, couldn’t work, couldn’t go anywhere and at my wits end.For me going private was my last resort but now 8 weeks post op I don’t regret it, I was seen and operated on within 3 weeks. It’s terrible that we are put in this position but for me it was the right decision…Best of luck with it.x

[LottieXD]

hey 👋

I was waiting and waiting and waiting for my surgery with the Nhs and going to A&E in between but they didn’t produce a date when my op will be just kept saying it’ll be a few more month or it’ll be in the new year but I haven’t got anything.

I really got upset and low I was missing work and I was scared if I didn’t get sorted soon they would get annoyed. So I booked in private, end of November had a consult, then an MRI a week later and then another consult 5days later and then she has sent me for surgery. It was booked for first of Feb but I received a call on the 30th December to move the op to 11th January. It has been such a quicker more caring experience and I know it’s because they get paid more and their clientele is small due to people not being able to afford it but I feel like I’m being listened to as a person rather than a number :/ .

If you can’t afford the surgery private because it is expensive, my friend went for a consultation private and then they boosted her up the list on the nhs with the private doctor if that makes senses.

I luckily got some private health insurance and have managed to do it on that they covered me for pre-existing conditions- if you could do that, maybe that would be a good idea rather than a loan ?

Hope this help rather than it be just a load of rambling sorry 🤭

Hope you also get something sorted soon I can imagine it’s a nightmare xx

[Shorty9 in reply to LottieXD]

Hi LottieXD

I've been thinking about the private root too as im offered private insurance through work, but can't get covered as pre existing. Please can I ask who you went with? I do have other chronic conditions so fully aware I may still be illegible, but always worth a check.

I hope your surgery goes well on the 11th!x

[LottieXD in reply to Shorty9]

I’m with Bupa they cover for pre existing but before signing just check the t’s and c’s. I hope you can get something soon !! It’s hell the waiting mentally and physically

Thank you I hope so too 🤞🏻 x

[Shorty9 in reply to LottieXD]

Ah, I think they're one that I have tried. But yes will make sure I read all the t&c too!I'm not drastic at the moment - only 4 months in on zoladex and doing well on it, but seeing how long people are waiting its making me more pro active. I've already spoken to gynaecology to check where on the list I am for my review, as long as that isn't overly delayed then I should be ok, but as I say, I'm just preparing my self as its taken years to get to this point. 😊 xx

[Emm10]

Hi Cloverwolf, I feel your pain! I too was listed over 2 years ago and received nothing but a couple of letters to tell me they had me on the list! In December I had had enough and am extremely fortunate that my husband has private healthcare through his job, I contacted a consultant, had an appointment a week later and my hysterectomy is scheduled for early March.

It’s extremely frustrating that we are almost being forced to go private if we want our health concerns addressed due to the extreme pressures on the NHS.

Although going private has worked for me, I wouldn’t recommend getting yourself into debt and would hold out as much as possible - however, if you are struggling with symptoms, I would regularly contact your gp/consultant and ask for an update and explain that you are in extreme discomfort and feeling low - I can’t promise that will work and you get an earlier surgery date but it’s certainly worth a try, it may move you up the list as an urgent case or at least you can get some additional medication to help with the low mood - I was prescribed anti depressants to deal with the low moods I experienced after having mirena coil fitted, and they certainly help.

I too went down the talking therapy route and it did have a positive effect however, the most positive was the time I received my date and was able to be discharged from therapy shortly afterwards.

Please make sure you go and see your gp and get additional help and please keep us updated - sending lots of hugs xx

[Strongspirit7]

I completely empathise with you. When you are in constant discomfort you just want someone to take it all away and I can understand your consideration of paying to achieve this because an operation date is just not being made available. Without clarification it's hard to know what to do. There are so many women in this position including myself on a waiting list. Hoping to have some form of correspondence as to the next steps towards helping your situation. We are so good at being patient and understanding the difficulties within the industry. I find I am now doing daily stretches to help improve the constant back and hip discomfort. Just to ease the discomfort and try and prevent the sciatica in the legs and back. Anything to help with pain and discomfort without having to take strong medication which can cause other side effects. Try to look after yourself. Rest when you need to. Do nice things for you. Best wishes and kind thoughts. Little things can make it a little more comfortable. This is the link I was recommended from my brother

healthline.com/health/lower...

[Silverskylark]

Hi Cloverwolf,

It is a a horrible situation to be in and sadly a lot of ladies on here are in a similar position. I hope that soon, there will be more positive news for everyone.

I was put on the waiting list for a hysterectomy and bowel work in 2019, so that's 3 years. I have been on zoladex for 2 plus years with a break after 15 months to give my body a break and then put back on it as my symptoms became too difficult to deal with. My mood has been poor and my pain has been unbearable at times. The anxiety and frustration is sometimes difficult to keep a check on. I feel for my lovely husband, who has been very supportive even when I chew his head off about some trivial thing. I have found a plug in heat pad helps and lots of rest, with gentle exercise just to keep things moving and not turn into a total couch potato.

The main issue is the back log from the pandemic when a lot of gynae departments closed or scaled down there operations to help with covid patients elsewhere. Some say this back log is clearing so there is hope.

Communication has been poor where I am too, but I found the liaison service beneficial. With their help I am now waiting for a call from my consultant and finally have a date. Fingers crossed, this now goes to plan.

All the best and I hope you soon get answers and an idea of time scale. x

[dee999]

I was in the same boat as many-waited years to get uterine artery embolisation for massive fibroids on the nhs- eventually got it done in 2019- most painful experience I’ve ever had!- no follow up appointments due to covid.

End of 2021 and didn’t really notice much difference in my body shape etc and started experiencing severe lower back pain- saw chiropractor who told me to see GP and if possible get a pelvic/abdominal ultrasound as she was concerned about palpating abdominal masses.

Saw GP no problem- she agreed that I had even bigger fibroids and referred me for nhs urgent ultrasound.

Bloods came back showing I was severely anaemic and was commenced on to daily iron tablets.

Waited a month and heard nothing re ultrasound and decided I couldn’t take the back pain any longer, so got a private appointment with the consultant who I had seen for my embolisation in 2019 within a week!

She also agreed with everyone else and said I needed urgent ultrasound and my only option would be hysterectomy but said it would probably be 18 months to 2 years for an appointment.

So I made the decision to just pay for a full abdominal hysterectomy with my savings and had my surgery done privately within 6 weeks.

I totally agree that the care I received was faultless and even prior to my surgery I was assigned a physiotherapist who I met with at my pre-op assessment appointment.

I am 4.5 weeks post op and I feel amazing for the first time in years. I have my follow up appointment with my consultant next week and women’s post surgery physiotherapist the following week.

I was given a booklet prior to surgery with physio exercises that I was to do afterwards, and the morning after my surgery I had physio twice daily to get me active again.

I have worked for the NHS for 25 years and think it’s a sad thing that you have to think about going private , but I couldn’t live with the constant pain- it was affecting my mental health and my work- so I had no option but pay if i wanted to get my life back. I have absolutely no regrets about going private but I’m just sad that our nhs has come to this, as many people won’t have the finances to fund their own surgery like I did.

[Hidden]

I'm sad about it as well I worked for the NHS until I had to give up the job due to not being physically capable and no I don't have my own finances my mum is going to give me a loan and then I will pay it back. Well I have some savings but I highly doubt its enough. I'm doing ok on the active front going for walks but stuff like sitting in the car for a long time is very sore I am still recovering from the five hour trip at christmas to get Grandad. What scares me most is the change in my moods and personality on zodalex I seem to be incapable of being rational which is unusual. This probably sounds the silliest dream ever but I want to work without a computer as a chef so that involves quite a bit of lifting which at the moment is just not physically possible.

[Gutfeelings]

Hi Cloverwolf

I'm so sorry you are feeling low and struggling with pain hun I totally understand.. I had severe endo and had multiple surgeries over quite a number of years. For me the last op I had was excision which helped loads. I have also been on nearly every hormone drug with varying side effects and its not easy when the side effects are distressing to you. I wonder if the zoladex is perhaps not the best medication for you and one of the others may be more suitable? Do you have an endometriosis specialist nurse you can contact? Or if not could you have a discussion with your gp or a gp in your practice who has a special interest in womens health and ask if they can write to your consultant to get your medication reviewed.

I was a nurse for many years and later worked in gynae as I wanted to help others who were suffering like me but eventually my health got too bad and I had to stop working but I'd also developed other conditions not gynae related.

I changed my roles and then later my hours and found it better for me to work shorter shifts but again due to another condition. I guess what I'm trying to say is keep aiming for your dreams and never give up there is always a way and you won't always feel like this it just feels never ending at this time but you will get through this.

Please do contact the gp or endo nurse if possible and see what they can suggest regarding the zoladex. Also maybe your bloods need repeating to check incase you are deficient in anything? I always feel quite low, irritable and anxious when I'm anaemic or when they discovered I had b12 deficiency.

Keep fighting hun you are stronger than you may feel at times.

Be kind to yourself..

Take care x

[Hidden]

They are repeating my bloods in a week as my haemoglobin was raised again which I hope is due to the zodalex. The drs said not to worry but it's hard not to especially when I made the mistake of going on the internet. I don't remember having these problems on prostap. I am concerned about this as I am normally anaemic and I know my dad had weird bloods when he had cancer so I am scared. I don't have an endometriosis specialist nurse but the drs know I told them about the moods from the beginning where they were more intense swings but they just said it would settle down and referred me for talking therapy which I'm still on the list for. I am also scared of admitting my feelings for them to decide I'm not strong enough for the operation I have no desire to go into hospital for mental health. I have had no communication from my consultant apart from the initial report last January. I am due another injection on Tuesday and I am tempted to cancel it.

[LawsTra]

HI

I have been awaiting over 2 years to have my gallbladder removed and it is only then they will look to see how they are going to deal with my Stage 4 Endometriosis while they have me opened up. I have no idea if it will be dealt with there and then or if they will need to do further treatment.

The hospital did call last year and ask if I wished to remain on the waiting list and I asked them why they would ask this. They said it was in case I chose to go private. I explained that if I had the finances to go private I would have instead of waiting. When I asked when it might be, all they could say was it would not be in 2022.

Since then I have had another letter telling me that I may have to travel to another hospital up to 150 miles away instead of the one 1 mile away from my home for the operation. This is so resources can be spread out more evenly across the different NHS areas to try to clear some of the backlog.

Waiting is hard but do not get yourself in debt if you can wait