Has anyone tried The Chute trial

[nicolajones63]

Ive just been talking to my gynae dr about going on a study trial called The Chute trial. Has anybody been on this and has it helped please

[Tboag]

Hi, I havnt heard of this, what is it please??

X

[nicolajones63 in reply to Tboag]

Its a 3 month drug called Esmya that is used prior to operation to get rid of endo

[Tboag in reply to nicolajones63]

Does it intend on shouting down your overies so as to stop your body producing estrogen, if so, it's similar to prostap,

What operation woukd cone next, do you know??

[nicolajones63 in reply to Tboag]

This is what the info sheet says

Esmya is a selective progesterone receptor modulator (SPRM), which is licenced in the UK for treating fibroids. The drug binds to receptors in your body that normally respond to progesterone, a hormone produced by your ovaries. The drug will either stimulate or suppress the area of the body where it is bound.

Ive taken Prostap and didn't respond well to it, I started with lots of stomach problems which they are aware of

[nicolajones63]

Yes its a endo specialist that is supposed to be one of the top in his field. They've already agreed to operate by removing one ovary, part bowel dissection and removal of endo off left ureter, but by going on the study it will bring my op forward slightly and hopefully help with pain in the meantime

[AmeliaJane123]

I am part of the trial and have just finished my 12 weeks of esmya and I think I have felt improvement. I'm 22 and zoladex felt too much risk for me at my age and I am glad I made the choice I did. It's been really possible, my periods stopped, my pain eased up and I have managed to feel more in control of my life. I had a couple of weeks at the start where I felt a bit hormonal but once that cleared its all been great my consultant and his registrar have been brilliant, always just on the end of the phone if I have needed to speak to them or felt a bit crappy about it all. I would recommend it to anyone. They are operating on me in September and I will let you know the outcome if you like? Because hey it could all be in my head

[nicolajones63 in reply to AmeliaJane123]

Hi AmeliaJane, thank you so much for replying. Im so glad you have got on well with the Esmya. Did you get any headaches or nausea in the beginning as I was told that could happen. Im under Norfolk and Norwich hospital, do you mind me asking which hospital you are at. I hope your op goes well and yes please I would love to hear how its gone. My op should be sometime in December so it could be a fun xmas lol. Good luck x

[SatansLeftHoof in reply to AmeliaJane123]

As someone who was put on zoladex at 20 your decision to not take it was the right one. It colossally screws up your body and then doctors do not fully warn you of the risks as they just want you to shut up and take it. A year since being off of it and I'm still having problems with the side affects it's caused. Never ever touch the stuff.

[Ama93 in reply to AmeliaJane123]

Hiya what isthe update? What surgery did you have?

[AmeliaJane123]

Yeah I had headaches, one day in the second week that o had to go back to bed, slept a deep sleep for 20 mins and then woke up and felt fine. Felt very hormonal and quite honestly mean for the first couple of weeks then so much better! The only side effects I had consistently were hot flushes and I didn't have a period all the way through. I also had a few hormone spots around the time when my period should have been. Yeah I'm under the same hospital Mr M and Mr S your consultant and registrar by any chance? (Not sure I should give full names on here!) have you started the tablets yet? I'm sure you'll be fine! A rubbish time for an operation but at least there is good stuff on TV xx

[nicolajones63 in reply to AmeliaJane123]

Yes ive got the same doctors, they are both lovely aren't they. I start my pills hopefully next weekend so very apprehensive but excited at the same time. Im glad you didn't have too many side effects and if it helps the pain all well and good. I already have a lot of hormonal days so might not notice any difference lol. I live in Gorleston are you anywhere near x

[AmeliaJane123 in reply to nicolajones63]

They are so lovely! The best team and I totally trust them..... Rare to get that isn't it? Don't be apprehensive, I'm sure it will work for you like it has for me I always said that I was weird as my endo didn't seem to give me much pain unlike lots of the other ladies I have spoken to but now after having these tablets it has made me realise how much pain I've just accepted as I have felt so much better than before I was on it. The only thing is I have struggled to lose weight, I haven't gained any but have been working hard to eat healthily and exercise and can't seem to lose any weight which is hard going. I live in Norwich just down the road from the hospital so that's not too bad. So glad to have met someone who hopefully will have such a good experience like me xxx

[SatansLeftHoof]

I will second ameliajane on that one! I'm under Mr M at the N&N and he is wonderful, took me really seriously and performed my op personally (I have complex endo and was quite a challenging case) Honestly Mr M is fantastic and is actually registered as an endo specialist surgeon on the specialist register,the technical name of which escapes me right now. Good luck with your op! Xx

[nicolajones63]

Thank you so both so much for your comments. I agree Mr M does really

Does take you seriously. I know what you mean Ameliajane about thinking you are not in too much pain sometimes compared to others but you really do just get used to the pain. Mind you I was so bad a month ago they admitted me to hospital for 4 days as I couldn't move but luckily it's easier at the moment. It's just every day until your op seems like an eternity. When they told me it was a 6 month waiting list it was an easy decision to go on the trial just to secure a date.

Mine too fluoxacillin is quite complex as as well as womb and ovaries its on bowel and ureter and I thing bladder since last lap so waiting to see bowel specialist as well.

Whoever said it was fun being a woman was lying lol xx

[SatansLeftHoof in reply to nicolajones63]

We have endo in almost the exact same places! Mine was/is on my bowel, on my ovary and over my ureters which was actually why I got stitched up on my first lap claiming it was too difficult to remove full stop. It was also spattered across my abdominal cavity wall, look like I'd been shot with buckshot. Being a woman is absolutely rubbish. Xxx

[nicolajones63 in reply to SatansLeftHoof]

Oh you poor thing. Did it cause you problems with foods with it being on your bowel. I am now wheat and chocolate intollerant and quite a few other foods. I lost over 2 stone as at one point I could hardly eat anything without being in pain.

What is happening with you now. Have you got any more ops lined up and how are you feeling x

[SatansLeftHoof in reply to nicolajones63]

Oh gosh poor you! That's awful. What did they do about the pain and intolerances? Surprisingly and thankfully no! But when I need a number two I don't get the you need the toilet feeling I just get excruciating pains shooting through my abdomen for up to 3/4hr before I need to go do my business. Id say that's down to the bowel endo. I'm trialling the coil and seeing if it helps and if not the clinician I saw in hospital on behalf of my gynae said "well have to discuss further more serious surgery with a bowel specialis as well as my gynae and I may end up with a temporary stoma bag" which was her way of probably trying to put me off having the surgery. Sorry but I'm in pain and I'll risk a temp stoma bag if it means I'm not in pain every day. I'm hoping the coil works, I'm not overly optimistic but I'm still hoping!

[nicolajones63 in reply to SatansLeftHoof]

They haven't done anything about the pain and intollerances, im just praying that after my op in December it may help settle them. I have also been warned about a possible stoma bag, but think its a small price to pay to get some relief from the pain.

How are you getting on with coil? I had 2 fitted last year and both slipped so had to have them taken out. I was admitted to James Paget hospital one time as I was in so much pain. Have you tried prostap injections. I think it was through them that it went to my bowel as that seemed to be the start of stomach problems.

Do you live in Norwich or nearby as I was wondereing if you and AmeliaJane fancied meeting up for a coffee sometime so we could share our experiences, don't worry if you don't want to either of you but we could arrange it through private message.

[SatansLeftHoof in reply to nicolajones63]

Maybe ring up the Dr and demand decent pain relief? I had to fight for ages to get mine but I'm glad I did, even if its only lessened my pain. I'm glad I'm not the only one who feels like that about a stoma bag. Compared to the misery that is endometriosis I'd rather a bag for a little while if it meant no pain. It's quite painful at the moment as I'm withdrawing off the pill so bleeding, coil settling in and post op so pretty sore! Still having pre-toilet pains so no change there but only time will tell I suppose. How one did it take for your coil to settle in? Before they fell out of course. I live near to Norwich, about 45 mins out. I'm a bit nervous meeting people off the internet, so can I think about it? Xx

[nicolajones63 in reply to SatansLeftHoof]

I lasted about 2 weeks with the coil both times but to me it was obvious they had moved. I had an ultra sound and it showed it had moved quite a bit.

That's fine about meeting up, I don't want to force anyone it was just a thought as I know for me talking to other people helps, if you feel you want to message me and if not don't worry at all x

[AmeliaJane123]

Sorry for being a bit quiet ladies, I have been busy with work. I can't believe we are all under the same doctor, and a fantastic one at that! I would be up for meeting up but it depends when everyone is free as I head in for a separate operation on 4th sept then have my endo one at the end of sept (oh it's all going on!!!!😂) so I'll be out of action for a couple of months. Can I ask you both more about your bowels? They found it on my left ovary, my Fallopian tube is done unfortunately and will be removed, my bowel, my bladder and that general splattering too. I have been convince it causes me pain when I've eaten as I blow up like a balloon. What have you found? I

Kept being told it was unrelated but I know it is lol. It's so nice to know you both are having the same great service as me even though it all takes time. Is it this week your start wants?

[AmeliaJane123]

That was meant to say starts your esmya **** my phone doesn't like the word must be a reason for that

[nicolajones63 in reply to AmeliaJane123]

Ive got it on my right ovary, bowel both ureters and the splatters elsewhere. My bowel movements are quite good at the moment but I do find I have to go to the toilet twice a day to not be in agony. When I was taking co codamol I got very constipated, so had to take something daily to help me go, I then went onto nurofen which upset my hiatus hernia and acid reflux (which only appeared since all this started) so now im only on paracetamol which although it doesn't affect my bowels only slightly takes the edge off the pain.

Yes it is this week hopefully I start the Esmya. I go to see Dr S tomorrow for the results of the tests done and he will give me drugs then. Im due on, on Friday so fingers crossed I should soon start. Im a bit apprehensive about test results as when he did the internal he said he wasn't expecting to find and nodules as none were present in lap in April but then said he had found some so im a bit worried what he's going to tell me.

I cant believe all that you are going through and still manage to keep a smile on your face.

I will PM you with my phone number so we can sort out meeting up hopefully before your first op x

[nicolajones63]

Saw Dr S today. Results from all the tests were all fine which was a relief. Got the 3 months supply of Esmya which hopefully I start on Saturday. Given a provisional date for op as 21st December (perfect timing for xmas lol )

Hope you 2 are ok x

[Abbeycullingford]

I'm so pleased to have found this Post-has helped to read of other's experiences. I was admitted to nnuh as an emergency at the end of June and taken down for a laparoscopy to remove appendix as Drs thought that's what pain was. Appendix Was fine but ovarian cyst had burst and they thought there was endo. Last wk had 2nd laparoscopy to formally diagnose endo and see whether could be removed. Unfortunately advanced endo and couldn't be dealt with. Ended up being rushed back in sun with an infection from laparoscopy and came back out a couple of days ago. Have signed up for chute with Mr M and Mr S and like you ladies, also felt v confident in them both. Have done initial screening so next appt 4 weeks time.

I had no idea before this about endo other than hearing about it in relation to fertility, but having read lists of symptoms, I tick so many of them, I can't believe my Gp never thought about endo. Was reading about endo earlier today and found out that you can even still carry on getting it even if you have hysterectomy and ovaries out too -worried I'll never feel better, so really nice to hear of tablets helping.

Hope you ladies keep in touch on here as would love to hear more about your endo journies x

[nicolajones63]

Hi Abbey, its lovely to hear from you even if it is on such horrible circumstances.

You really do sound as though you are going through it at the moment and my sincere sympathies are with you.

I started the Esmya 2 weeks ago and was quite nervous about it. The first week I hardly had any side effects but this week because I have a lot of stomach problems and acid reflux I started with acute pains in my chest and down my right side. I emailed Dr S and he said it could be a side effect or just something else and to persevere and luckily the pains are now subsiding. He even emailed me today to see how I was. Its like having your own private doctor lol.

I will PM you my phone number incase you want to talk at all. I did also suggest getting together with AmeliaJane and Fluoxacillin but nothing has been arranged and im not pushing anyone I just thought it might help to hear other peoples stories.

Either way keep intouch with how you are getting on and good luck

[nicolajones63 in reply to nicolajones63]

Im sorry if I have offended any of you by suggesting that we meet up, but it seems like since I pm'd you all my phone number nobody wants to talk to me even on here. I did only want to talk as am struggling myself and talking helps me, but I will just suffer in silence

[AmeliaJane123]

Hello Nicola! I am sorry things have been really crazy for me which is not even endo related! I would defo be up for meeting up at somepoint. How have you been doing with esmya? I have now finished my trial and have been in pain again, just want the operation now as I know it has worked for me. I can just feel it has.

It is like having a private doctor, they are always just so kind!

How many weeks have you been on it now? Are you still struggling?

xxx

[nicolajones63]

Hi AmeliaJane, Thankyou for your reply. Im so sorry to hear of your other op being cancelled. That's just awful when they do that. Have they given you a new date for it. At least its only 3 weeks until your endo op although when you are in pain that seems an eternity.

Ive now been on Esmya and am not good. 8 days after starting it it set off my acid reflux badly and have had bad pains all down my right side and under the rib cage. I emailed Dr S and he said stick with it and hopefully by the second month things will get better. Sinced then the pain has eased slightly but still spend every day in pain. Oh well 3 weeks down only 9 to go lol.

I will PM you about meeting up

xx