Ladies I've been told today that my exploratory laparoscopy will not be carried out until August.... So much for it being classed as "Urgent"!
This lap isn't even to treat the Endo, adhesions, cysts, fibroids or adenomyosis! It's just to see how much the bowel is involved!
Just feel like putting two fingers up to the medical profession and withdrawing from all treatment!
Just had enough!
X
Oh Barbara, that's not good. Really sorry to hear this. That's quite a long wait. Is there any way you could get on a standby list or push for priority. You really have suffered enough. Sending hugs to you. Wish there was more I could do or say. xxx
Hello Brownlow.
I have said I will accept a cancellation but the secretary said they don't come up often !
Have you any thoughts on the depo provera injection!
Barbara x
Hi Barbara,
I'm probably not the best person to ask for an unbiased view of Depo Provera. I'm a scaredy cat when it comes to drugs and I feel my symptoms are at a point that I can manage. That has a huge influence on how I view drugs and sometimes I might sound blasé or smug. If my symptoms were to dramatically worsen I'd have to review the situation and I might run to the doctor screaming for anything to suppress my symptoms and get rid of the pain no matter what the cost. I have no shame! So my highly biased view is that I just can't bear all the hormonal tinkering with the sledgehammer drugs that cause havoc with the rest of our body.
It's so easy to be negative but I find it virtually impossible to be positive about any drug any more...so I might as well be just negative about Depo! The things I'd be concerned about are migraines, depression, weight gain and osteoporosis. They don't know if the osteoporosis is reversible. I would think not.
Having said that I should think that your idea is really only to use it until hysterectomy and removal of endo so this lessens the concerns somewhat. Seeing as you no longer have the Mirena it might be an option for say 6 months. There's a version that has a lower dose of progesterone. See the section on Commercial Products here en.wikipedia.org/wiki/Depo-...
Another thing to consider might be progesterone creams. Some women on the forum have used these. Again, I'm not a fan of messing directly with hormones but if this gets you some respite until treatment then it might be worth looking into. The reason I suggest it is because you can adjust the strength yourself or stop if you get any bad symptoms. Depo is a 3 month injection that can't be reversed. xx
Hi Barbara, I am really sorry to hear your latest news. Haven't been on here for a few days as I have been visiting my eldest daughter in Aldershot or I would have responded sooner. When it comes to Depo-Provera all I can say from my experience of it is that you will gain weight and the pain will not go. Your periods WILL stop but that is the only positive; a major one I know, one week of the month, but that's it! If you try it I hope you get more out of it than I did. Good luck! Thinking of you. xxxx
Barbara I am too sorry for you being messed around like this, it really isn't on..... If it makes you feel any easier I have been thinking the same, shall I just accept my life of pain and misery or do I go on having pointless operation after pointless operation. Is it all worth it because at the end of the day how many of us are any any better off. I have my pains back today as I am leading up to my period . And the cycle goes on.... But you could always contact PALs, they have helped me a couple of times to get your op brought forward. It is such a battle with these docs even before we have tackled the illness. Sorry but it is so depressing to think we can't get proper help without having to pay out a small fortune, and even then it's a gamble as to will it work. X
Barbara this is is too bad. I know how you feel. I have to say this is a topic I have been deliberating about lately, because I feel I get iller and iller as I wait to see the people I know I need to see, to get done what I know I need to get done. I can't help but wonder what would happen if we weren't all so blinkin' well brilliant at coping with this, and instead of being strong and coping, what about if we didn't cope, what about if we turned up in A&Es around the country saying that this pain is not bearable and this quality of life is not acceptable. Sorry for the rant. Just so frustrated that so many people are suffering and it doesn't feel like it has to be, or shouldn't be, this difficult.
So being positive, here are things that have helped me. After losing my left ovary at age of 21 to a grapefruit size chocolate cyst, and years finding the right treatment from pills to pills and back again, I have been lucky to have had 4.5 years of symptom free life recently and here is what I did:
Had a laparoscopy and got a merina coil
Cut out wheat and dairy and caffeine
Took up walking / running / yoga / tai chi depending on how good I was feeling
Spent time outside
Made time for my hobbies - I love birdwatching and photography. Easily done, pain or no pain.
Asked for help from people around me
Tried to keep a balance pace of life
Acupuncture
Stay interested in other people, do nice things for others
Monthly massage on pay day!
Started writing when I felt low
Feel happy with the small stuff
Shortened my future - when it all felt too much, just do 5 minutes or a day at a time. Whatever feels good. High powered professionals all over the world are learning about mindfulness and the benefits of being in the "here and now". We have a secret weapon to keep us right there! It can be a great place to be, to notice the beauty in the small things. My honesty plant has just gone to seed by my kitchen window. Its beautiful how it makes coins to contain its seeds. Can't wait to set some more this year to give to people as gifts.
Maybe something here will resonate. Day at a time! x
Sorry to hear that Barbs. It's rubbish. I know how you feel - it seems to take us forever to get anywhere and then whatever they do never seems to help much. I like Doves comments. I suppose the one good thing to come out of having endo is that it makes us look at our lives differently- I too have slowed down. I don't have to be perfect and do everything for everyone. I'm doing yoga and walking and making time for my new hobby- cake decorating. Stress seems to feed the endo pain- don't let it beat you. You've done amazingly all this time- you'll get there and were all rooting for you. Xx
Sorry to hear that Cuddlybarb!! I know you must feel like giving up!! We can only hope you get a cancellation!
In the mean time i can only hope you arent in too much pain 
Sorry there isn't anything else to say/do to help you, just know were all here if you need us!! xxx
Sorry to hear about this. Hopefully you will get a cancellation. Dont really know what there is to say without ranting about medical professionals but i hope that you arent in too much pain. Hugs.
I'm in the same boat as you. After having a diagnostic lap, I was referred at end of March for excision surgery and I couldn't even get the initial consult with the NHS surgeon until August (let alone treatment). I have since had the consult (same surgeon as NHS but through private) and now waiting to hear back about a surgery date. But the referral letter from private to NHS has somehow disappeared in the fax machine, so they are refusing to put me on the waiting list until they receive it. The private secretary actually has a receipt from sending it, so I am just pulling my hair out at this stage. She has now sent it twice and if I don't hear from NHS within next couple of days I will escalate it with PALS.
I am also trying to get clarity about when the 18 week (NHS's legal maximum waiting time) clock starts ticking. I am getting told different things by CCG, PALS and NHS Hospitals.
Yep, two fingers up at this point, right there with you! Hope it gets sorted for you soon. x
nhs.uk/choiceintheNHS/Right...
You may find the above link helpful x
Thank you for the link Cuddlybarb. The guidelines online are different to what they tell me on the phone. My hospital is telling me my 18-week clock hasn't started ticking yet, until they receive the second referral letter from the private hospital. But they already received a referral letter from my first consult back at end of March (to do with this surgery which I still need) and I have received NO treatment since then. My interpretation of the law is that the clock should start from my first referral. They of course have other ideas. I will keep battling with them on it.
Are you going to try and battle with them re the date for your exploratory lap? I really hope they can bring it forward for you. xx
I think I'm just going to give up! I will have to accept my life as it is now!
What makes me cross is that if we had the money to pay for the same surgeon to do the surgery privately, we would be operated on within a few weeks!
X
I know, it is horrible that it always comes down to money. We live in an unfair world.
It's also crap that on top of all the pain and emotional trauma we go through, having to battle with doctors and waiting lists to be seen in a reasonable amount of time is such a horribly draining experience. I'm not sure how much fight I have left in me. And all the stress it creates is making the pain symptoms worse! What an irony.
Hi again, I am waiting to see if I can get TPE on the NHS. I have a strong feeling though that I won't be able to as I have already had 4 ops, he is currently 1 of 2 that I know of that has started doing it on NHS only recently. If I can't get that I don't want any more half a job ops, what is the point I. Taking only some away .... I may just have to accept my lot. X
Hi Barbara,
I am sorry that you still have to wait so long. I feel for you. My diagnostic lap has been put off so many months as my surgeon was off sick last year!
I am worried your migraines goes worse if you take more hormone injections. I don't want to have anymore hormone treatment in any sort as it will make my migraines worse on top of my mood swings. I am too scared with having it now.
I had a period after the injection worked and it wasn't too bad. I started to take Singular (asthma tablet - there has been researches that could work endo period pain). I don't know whether it was because of the tablets or the injection was still working a bit. I have taken the tablet for 5 days and I forgot to take one day and that day I had worse pain. I don't know it maybe coincidences. I got some Singular from Japan but I am going to ask my GP to prescribe next time. I have no side effect from it so far.
I sometime feel I have to accept this endo pain and get on my life but it sounds so miserable. I need to do something otherwise I don't have my life. Before I lose control endo again I need to find something and Doctors are not helping!
Take care
Maybe we should start buying lottery tickets...
xxx
So sorry Barbara. I really do know how you feel. You could try ringing and having a breakdown or calling PALS even if none of that works at least you feel like your doing something. Sending hugs.xx
I am just so sorry to read about your frustration and the awful system - how can they not treat these cases as urgent due to the pain - it beggars belief. Something drastically needs to change within the NHS regarding endo treatment and endo needs to be a separate specialist medical category where advanced cases, in particular, are treated urgently. That is good news that a surgeon is doing TPE on the NHS - we just need so many more to take this surgery up. Sorry not to be helpful but I totally sympathise and send hugs. xx
Good morning ladies.
Feeling a lot more positive today. I spoke to my GP who thinks the depo provera injection may help until the lap. So she has written me a prescription (and an extra supply of my regular pain medication!) and IF I want to go ahead with the provera injection, I can just make an appointment with the practice nurse.
So I am going to see how things go and have the injection if my periods become too bad again.
I am also going to loose weight (ready for surgery!) and look forward to my holiday at the beginning of August .
Thank you very much for your support.
Lots of love to you all
Barbara x
Just back from gynaecologist I give up 😢
I give up. 
Give up :(
Don't give up
I literally give up
