Positive vibes 😁: Hello, I am quite new... - Endometriosis UK

Endometriosis UK
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Positive vibes 😁

B3CCY
B3CCY

Hello,

I am quite new to this group. I have an endemertiosis diagnosis and awaiting a hysterectomy however due to the COVID-19 this has been cancelled.

I joined this group for support, help and tips on how to deal with my symptoms. I have noticed a lot of negativity towards the NHS in recent posts. This makes me upset an an A&E front line nurse. I understand people are frustrated an treatment, procedures and specialist appointments have been cancelled. My pain can be excruciating also, I can feel down and fed up.

However the NHS have not cancelled appointments for the fun of it. They are trying to keep up safe. Seeing Covid positive patients makes this all real. I understand A&E may not be able to give you rapid treatment for your chronic condition at the moment but please try to see the bigger picture. People are dying and many of my colleagues are very sick.

I am sorry for the rant but would like to see more positive comments and uplifting support and advice. As we are all going through this and negativity will only make it work.

Stay safe and look after yourselves ✌️ (peace). Xx

44 Replies
oldestnewest

Can I ask with the hysterectomy, how come you’re allowed to have one? And what age are you?

I’m only asking because I have endometriosis and I suffer with it badly it’s ruining my life and I’ve had a call today to say that I don’t warrant a hysterectomy despite the fact they’re offering me no other treatment and are telling me to live with it. I’m on strong painkillers for when I really need them but they keep saying I can’t be on them long term which worry’s me a hell of a lot because they allow my to function and look after my daughter xx

I hope it works for you and you feel better ☺️

I also agree with you it’s frustrating but they are all doing their very best and risking their lives for us so I have the upmost respect for them.

B3CCY
B3CCY
in reply to Endosucks28

Hello,

I am 32 years old with 2 children already and I have agreed I do not want any more children. I am currently under a private consultant who after several investigations determined the severity of the condition I'm assuming.

I'm already on several medications. I understand some trusts no longer offer hysterectomys as treatment due to the risk factors. Also with the COVID-19 all un vital operations have been cancelled.

Stay safe xx

Endosucks28
Endosucks28
in reply to B3CCY

Oh ok a lot of people I’ve spoken to go private as I’m under the NHS that is probably why. I have the greatest respect for the NHS and forever grateful for them but they’ve seen me once and just said there’s nothing they can do which a lot of people don’t think it’s fair and I’m a little upset too my gp had to fight hard to get me seen too.

Stay safe too

Xx

Also what medications are you taking maybe I could suggest some to my Gp as they don’t really understand the condition? Xx

B3CCY
B3CCY
in reply to Endosucks28

I take paracetamol and brufen when it's mild. I am also taking codien, mefenamic acid, alveine and transaemic acid xx

Endosucks28
Endosucks28
in reply to B3CCY

Thank you xx

Is there anyway that you can have a consultation with a private specialist who also works for the nhs? Thats what I did and I explained I could only afford that initial appointment and he suspected endometriosis and he put me on his nhs waiting list and I had a laparoscopy and treatment (I’m on zoladex injections) within 6 months. The nhs is so vital to us but if you don’t have a gp who understands then it’s like banging your head off a wall. I really suggest as well that you change your gp and demand you get referred to a gynaecologist. Threaten to complain if you have too X

I don’t mean this to sound rude but was this a response to my comment? Xx

Yes haha xxx

Okay I can’t afford private unfortunately and I’ve had one laparoscopy but they are saying there isn’t enough evidence that it works and a lot of gps I’ve seen refuse to prescribe me opiate medication and tell me that I shouldn’t be on them and be quite horrible about it so I don’t trust people I feel like they just think that’s it’s in my head and I’m starting to believe maybe I’m just crazy xx

What a nightmare for you I wish I could help you. Your GP needs shook 😡. I suppose all you can do is hound them every month until they do something xxx

I believe it depends on your age and medical circumstances. I struggled with severe endo for years with multiple surgeries and had a hysterectomy at 39. Unfortunately, I went into surgical menopause and got very sick. You may want to seek out another specialist to review your symptoms and perhaps try different methods of treatment. I understand your desire to have a hysterectomy, but it can become problematic and can cause other health struggles. Have you considered seeking out a Naturopath...... I received great treatment and relief after seeing one

Take care

I’m in the same boat, they can’t help, a hysterectomy won’t help, I can’t even get Visanne in the uk and now none from over seas either. I can’t take pain killers, so I carry on and just vomit on the side of the road while taking my daughter to school usually. The depression from not being able to work is hard and they cancelled my talking therapies yesterday because they can’t keep me on their books during the epidemic, I must get referred again! It is hard and I often think it’s not worth living like this but my daughter needs me so I keep trying through the pain and tears. It’s not the NHS, in fact they all saved me, it’s the lack of support for people with our condition From government, before the covid even started. Lack of correct medicine to treat endo - visanne which by the way reduced my pain to half But I was only told about it after years. Big hugs lovely ladies, keep fighting xx

This medication for pain is it like allowed in the uk? I’ve never been told about visanne x

My gynae gave me a prescription but you have to go overseas to get the medicine, the drug company doesn’t offer it here, in New Zealand they did a petition and now its available to them xx

Thank you xx

I think people do appreciate that the NHS is not responsible for cxl ops but when you are in pain you sometimes say things out of frustration. I like you was fortunate enough to be able to have private consultant as the waiting time on the NHS was long and the pain so bad and that was years ago when the population was not as high as it is now. We are on your side and me and hubby will be saying thank you to you all at 8pm tomorrow night. Take care👋👋

B3CCY
B3CCY
in reply to Linley

Could not agree more with you more x I am also fortunate enough to have private Healthcare. My NHS gp started all my medications and referred me to the specialist xx

I'm sure everyone respects NHS frontline staff immensely, and knows (albeit not through experience) how tough it must be right now. You're doing a splendid job and should be damn proud of your vocation. But I do also think people need to be able to vent their frustrations a little here (as long as not actively being offensive - that is a total no-go I would hope).

I think with endo, so many of us went so long without diagnosis or treatment that it is infuriating, and when treatments are offered and then put on pause, together with the pain, consequences of endo and the uncertainty, it is bound to cause some frustrations.

The chance to have a rant probably saves a lot of terrified patients from ranting at overworked staff, so please do try not to take it personally if you see someone saying something that's off putting. Unless, again, it is really awful - in which case by all means use your knowledge to set them straight!

I was totally bowled over by the NHS docs and nurses I met before everything went crazy. The NHS is a treasure. Here's hoping we all have a return to more normal times soon. Personally I reserve my anger for people flouting lockdown for no reason - now that I have a *lot* to say about...

I agree with you it is very helpful to have somewhere to vent. I feel so sorry for women who do not get listened too or fobbed off.

I will work on myself to not take NHS comments so personally as I understand these are very worrying times. I hope we can all support one another through these very difficult times ❤️

Hi, I think the NHS are amazing when it’s critical, 999 saved my dads life, and his heart surgery. I’ve had two babies on the NHS, my husbands operation and the numerous visits with two kids to a&e the NHS is there and I embrace that.

But I’m sorry that women’s health and ongoing chronic women and pain related issues are brushed under the carpet, the attitude towards us is beyond belief, our pains get dismissed as “periods” we get sent away with mild painkillers in labour pains, we get so many attempts at being diagnosed that are missed, botched laser surgery by untrained surgeons, and women left infertile and with life long issues that could of been picked up.

Forcing many of us to pay for the privilege of being heard.

I won’t go on, but as above this forum isn’t an NHS bashing place, but I’m afraid we are in here talking only because no one else will listen.

So the biase on here will always be negative as the women who’s issues are all fixed won’t be on the forum asking for help?

Noodle31
Noodle31
in reply to Whoisthis

My endometriosis is now so bad they can diagnose it pre-lap just from an MRI, due to the huge cysts obscuring both my ovaries and my uterus being partially adhered to my bowel. My surgery is now on hold. I was only referred to a scan after I found a lump in my abdomen, and even then endo was not the first thought. Prior to Covid-19 the team I dealt with were as reassuring as anyone can be about something this awful, and they also moved very quickly to get surgery on the way - but I am still devastated that despite 15 years of pain and periods which often led me to vomit and pass out, and even being given an ECG as they once thought I was having a heart attack due to my pain, I now years later have to have invasive surgery and think of things like possible infertility in my early thirties, as someone who desperately wants children with every fibre of my being. It is devastating and the current enforced isolation and pausing of treatments probably isn't helping a lot of people feel very positive.

I got told by the lead in endometriosis that my pain is because I’m a women... and he’s the head of endo in Southmead he was very arrogant. He basically spent the first 20 minutes telling me about all his badges for what he’s done in his line of work and he knows it all and then had the balls to ask me what I discuss with my counsellor and told me that the rape that happened years ago has something to do with my problems... I was not happy. I then got a second opinion yesterday via a phone call and they said I have to live with it and there’s no treatment.. xx so I totally agree with you

What? No treatment at all? And sexual assault doesn't cause endometriosis - even if it did, it still wouldn't be your fault. I hope the third opinion you seek helps you.

No apart from contraception which I’ve tried thoroughly 🙄 and the coil is a nightmare for me it got stuck twice and I had an op just to remove it... and they want me to have another one. Thank you and I’m not sure I’m going to get a third opinion to be honest x

Never give up hope. I now how hopeless it can feel- whether your goals are pain relief or pregnancy. This whole year so far has been a daze. Keep knocking on doors until one opens.

Thank you x

I am not against people on here at all. As a sufferer myself I understand many of the symptoms and ongoing. My intention was not to offend or upset anyone.

However as a passionate NHS worker I often find myself needing to defend my colleagues. This does not excuse people who have had negetive experiences, I truly am sorry for people who have struggled with hostile staff and struggled getting a diagnosis.

I am not here to upset anyone. I mearly wanted a more positive vibe if possible, feeling low, upset and in pain causes us all to feel bad enough.

I like to learn tips and how other people deal wit their symptoms.

Keep safe xx

I do admire you standing up for the NHS they are doing us a nation proud.

Why are you using the private sector to get treatment? Could you not get the surgeon you wanted via the NHS referrals?

B3CCY
B3CCY
in reply to Whoisthis

I personally find the private sector is quicker and has shorter waiting times x

Hi

I’m a bit confused by some of the things you’ve mentioned. As has been said the NHS can be great for emergencies. They’ve been fantastic for some things. I know they are trying to do their best in the current climate.

Experience with someone else’s condition years ago showed me how consultants can view things so differently.

You’re working for the NHS but go private for specialist help. I think I’ve read this correctly. Doesn’t this mean you are aware of the shortcomings in the system?

Apologies if it seems a blunt question, I’m not trying to upset you, but to understand your views. Maybe you’re in a position that means you can make a difference to promote the condition within the NHS to create a change and be listened to.

Last year was hell, I had to go private to get anywhere and even now I ask the GP if they believe me, I was told ‘I’d provided enough evidence’. This tells me nothing that they actually believe it and doesn’t show any support. All the time I’m awake I know it’s there when I move or even just lying down and sitting.

B3CCY
B3CCY
in reply to Moon_maiden

I am currently being seen as a private patient because I worked in the private sectors for about 1 year and was given private medical care. I did not want to leave the osexislist so continue to pay for his services.

I am very passionate about educating other staff members that I work with about endemertiosis and have held several talks and sessions on this with gynecology support and Doctor input. So I am trying my best.

I am under NHS consultants for thyroid problems and migraines.

Hi hope your well and keeping safe!

Do you want if I asked how you managed to get consultant to agree to a hysterectomy. My consultant is ringing me today and another gynae recently told me the only cure is a hysterectomy ( I have and adenomyosis and suapected endo) I really want to take them up on that offer now. I know I’m young at 23 but I was already fortunate ennough to have caught pregnant and have a beautiful healthy baby girl. And I know the risks and chances with pregnancy’s with endo and adeno. I’m happy to not have anymore children and I won’t be trying ever. My sister also has endo and has had 3 kids carriages and 2 ectopics HOWEVER she is also fortunate ennough to of had a healthy beautiful baby girl too. I’m not saying it’s impossible just I don’t want to go through all that or even risk it so if I’m happy for a hysterectomy surely it can be done?

Also just want to say you and your colleagues are doing amazing things right now and Everyone is so grateful. I think the anger stems from way before the corona, with years and years of chronic pain like your self years of drs sending you on your way with the answer it’s in your head. I’m so grateful we have some an amazing nhs in our country but my guess it stems from before Covid x

B3CCY
B3CCY
in reply to Adeno2020

Bless you x sound like your endo is advanced. My consultant suggested it. I'm sure you have to be asked several question to ensure no further children. You should think long and hard about it because it is a very serious operation and does not always gaurentee results ❤️❤️

Adeno2020
Adeno2020
in reply to B3CCY

I know I just think when your in pain you just want it to stop there and then and don’t mind what it takes. got another reveiw in mind June hopefully get things moving. Hope your well and keeping safe take care. X

Hi,

I think its not about the people who work at NHS. It is the system. At my current hospital Im very happy. Appointments are easy to make, everyone is lovely, things go smoothly. I cant say the same about the previous one.

I used to complain a lot about NHS and with a good reason. When you dont have medication but you are in pain and noone give you what you need because an unsigned, unsent letter. When you have to wait one and half year for a surgery. When you have surgery but they dont remove what they have to. They tell about no proper imaging while it is just the wrong team. While they forget sending reports which costs months for you and get scans repeated. While with all this delay your chances to get preganant will be less and less. When they tell you that IVF referal will be quickly because they are specialist team but waiting half year when they say no, they not refer you because need to go to GP. And when you already organize through GP with other hospital and have an appointment, the letter reaches with a suggestion to see a fertility clinic.

Lot of wasting time and resources. But you get msg that if you miss your appointment how much it cost for NHS. It would have been cheaper to do my surgery in time and have a better chance to get pregnant than finance 3 surgeries and an IVF. It would be better to have a centralised database when a missed letter will not cause problems with your medicine.

I have lived in 4 countries which are way poorer or developing countries but i have better experience than here.

Im sorry for this venting, I dont mean to be mean. I complain but I have never been rude to my nurses or doctors. I know that their hands are tied many times. And their profession is between the most valuable. Now this pandemic shows us the reality about what is important in life. Health, food, shelter and the loved ones.

Sending you loads of love and stay safe❤

B3CCY
B3CCY
in reply to Hajnal

It's 100% understandable x you have been let down greatly. This awful condition affects so many women in different ways one of the most frustrating is fertillity. I hope your getting more support and help. ❤️ Stay safe x

I can’t praise the NHS enough . I had a total abdominal hysterectomy 7 weeks ago. My first appointment with the Doctor was in November explaining clearly the painful periods, bleeding in between periods, blood clotting . I had an ultrasound in December revealing two cysts and fibroids

By January I had a CA125 blood test which was crucial , this came back high. I was then fast tracked in two weeks for a Gynae appointment. Within the next two weeks I had CT scans and a hysteroscopy, which revealed a polyp.

At this point at my final gynaecology appointment was in February, it was agreed I had a total abdominal hysterectomy on 10th March

.

Endometriosis was only mentioned as a possibility , the uncertainty was more related to my cysts . My operation should have only been an hour or so. Over 4 hours later I was back on the ward after the surgery revealed endometriosis adhesions on my bladder, bowel, vaginal wall, Fallopian tubes, ovaries and appendix

I can’t praise the team enough that day , they worked extremely hard on removing all of it without damaging my organs or ending up with a stoma. I had 5 days in hospital , the first night I was cared for every hour on the hour, morphine , blood clotting injections, oxygen , codeine , blood pressure monitoring . Every day the nurses took me to the shower, helped me bathe to start with , drugs three times a day, help getting my pants and nightie on , warm and nourishing food to keep up my strength , checking my bloods etc !!

My consultant came to see me every morning , she made sure I was doing well before going to do her daily consultations and several surgeries . There was a team of at 12 people involved in my operation on that first day . I think the NHS are amazing, I totally appreciate that there are some frustrating stories on here which makes me feel sad as the process for me was unbelievably amazing , along with the other ladies in the ward.

I do feel that the CA125 blood test accelerated this as this can be sign of cancer (all my biopsies were clear) but a high CA125 test can be Endometriosis which I actually didn’t have all the classic symptom if despite being a Level 4 , this accompanied with other lumps and bumps on my ultrasound obviously went toward a TAH BSO operation.

This is me sending positive vibes to all , I did persist with my GP appointments, that was my third visit in two years but to a different Doctor in the final one - things had drastically changed and as you can read, that was a fast and thorough journey involving probably around 40 people - no exaggeration (including scans, blood tests, physio and pre ops, nurses , health care assistants ,etc) - just for me ! Thank you to the NHS , I am on the mend and thank you this forum for helping me and others dealing with endometriosis going forward as it never goes way ! Xxx

B3CCY
B3CCY
in reply to 45Bumbleb

That's an amazing story x and I will you well in your recovery x you are so brave. Its nice to hear a GP listens and you were fast tracked and sorted within a few months. Hopefully this will improve your quality of life, ❤️ Stay safe xx

Hi, I also work in the NHS. I had a total hysterectomy; everything out and some work on my bowels, so surgical menopause too. It was all stuck together. Had surgery Jan 2019, can’t fault the consultants at all. Had only four weeks to prepare myself, was very poorly with the endo in the Nov/Dec 2018. It’s been a long 26 years of pain. The books I found invaluable; Endometriosis experts guide ISBN 978-1-78504-147-1

Also hysterectomy association 101 handy hints for a happy hysterectomy.... this was my go to book....

If you want to ask any questions, please do reply. Good luck... it will still happen, just a little delayed.

Many thanks, I’ll look them up

B3CCY
B3CCY
in reply to PixieDot

Thank you for being so supportive and helpful x I hope your symptoms have improved since your surgery xx

Hi, i find this group so helpful. I am 51 yrs old had endometriosis for around 20 yrs was diagnosed around 17 yrs ago under a private consultant i had to had IVF for our beautiful son who is 16 now.

I have been under a NHS consultant for many years. Had coils, medications finally a laporoscopy removing my right ovary and fallopian tube on 9th March. Unfortunately i have been bleeding 6 weeks out of 8 had so much pain in my pelvis down my leg lower back. The medication my consultant gave my after my operation is Norethisterone doesn't seem to work.

Received a phone call at 9am this morning from my consultant offering me a full hysterectomy in 3-4 weeks. I was a bit reluctant, frightened i think! Going through another operation, she has sent an email for my doctors surgery to put me on an injection on to stop the bleeding and pain until my operation. Has anyone had these injections and will a full hysterectomy work im a but confused this morning.

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