Hi I’m looking for some advice from ladies that have already taken zoladex.
I saw a Private Gyne Consultant in August (…he is in Sussex I’m London based…) who prescribed a 3 month course of zoladex prior to any scans ect…
He wrote to my NHS G.P. asking him to give me the injections.
However I then received the results from recent private Adrenal tests show my Cortisol out of range.
Additionally I’m already extremely unwell with symptoms including: rapid fluid build up in my feet/ legs / abdo, rapid weight gain (no change of diet) poor circulation, dizzy, muscle spasms, fluctuating blood pressure, blurred vision, constant headaches, some hair loss (around hairline).
I had a suspected TIA mini stroke last August which I think was because of the pain I am enduring.
((*If this helps anyone - Acupuncture & Osteopathy has helped me greatly with non chemical pain relief))
My (NHS) Dermatologist, the G.P Practice Nurse & my (Private) Osteopath flagged up that I needed to sea Vascular Consultant back in April & it’s been a long struggle to get that - had to go Private but appt not till end of October.
The practice Nurses not happy to give me the injections considering my medical history & current escalating symptoms however the G.P was not concerned as “I had gone private so it was for me to sort out”…
I wrote to the Consultant enclosing my Adrenal results & a copy of my Dermatologist letter stating that I’m suffering Adrenal issues I asked him if he could recommend an Endocrinologist prior to me commencing the injections - however he wrote back to say that I should still go ahead with the injections.
The practice Nurse is still not happy to give me zoladex
because of the side effects & medical history and I’ve read some scary posts regarding what the side effects actually are & how ill it actually makes you feel.
Also although fibroid removal August 2010 seemed to settle my very heavy continuous bleeding - *post lap surgery* I’ve only had 2 forced bleeds with Provera (January 2012, May 2012) and one spontaneous bleed this year in July 2013.
If anyone can give me some feedback I’d be grateful as I just don’t know what to do?…
Thing is, I went to see the Consultant specifically because of ongoing *extreme pain post-op* (*laparoscopy & bladder bi-op) in 2011 which was left unchecked by the *operating hospital & my old *G.P’s who were closely affiliated with the hospital.
*They* just kept saying “leave it for now…” & even ignored advice to refer me to other specialists from Consultants I currently see.
I also need my umbilicus repositioned because of that mal-surgery which caused some kind of bowl damage ( been on Movicol for 2 yrs now) so it could be adhesions but no one has investigated...
2 years down the line so I’m not convinced that injections for Endo are best for me anyway?
The Plastic Surgeon I see is very supportive & will not go ahead with any surgery on my umbilicus until the root of abdo / bowel the pain is established but he is at a loss to know how to support me further apart from not discharging me as he wants to ensure I ‘don’t get lost in the system’.
I just don’t know who will give the correct advice re zoladex?
If you do respond to my post, please not I’m not online everyday so please don’t be offended if I don’t respond immediately.
Thanks.
Best wishes, L
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moonwish9
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DO Not touch it... if you have had a TIA or high blood pressure issues then it is definitely not for you.
I have in normal circumstance a lower than average BP rate.
Zoladex sent it sky high and I had all the symptoms you are now describing and you are not even on it yet.
Panic attacks, Heart palpiatations, blurred vision, dizzy faints, sore muscles, veins and bones and all the symptoms that one gets with a high BP. Most disconcerting and very scarey at the time.
All caused by zoladex and it went on for months all the time i was on that drug once it got going. Plus plenty of additional non-high-blood pressure related side effects too.
Once I stopped the drug all those symptoms disappeared in 2-3 weeks after the last implant would have been due if I had had it.
You are quite right to question the wisdom of the prescription given your medical history, and because it is permanently inside you for a month at the very least, what ever happens in that month you have to put up with till the drug is totally out of your system.
Unlike a course of tablets where you can stop right away after a bad reaction, you do not have that option on the GnRH implants.
If your pratice nurse is advising against it, and she will know that drug and the consequences far better than the gynae as she will be seeing her zoladex patients every month (whether they take it for cancer or endo)...her 1st hand experience of what it can do to patients is a darn sight more valuable as a tool than a gynae who doesn't see his patients at all while they are on the drugs, and probably has only ever read the patient advice leaflet briefly and certainly doesn't appear to have noted your past medical history.
Just give it a miss..don't even consider it. The risk is too high.
Besides which it will not cure your endo, at best it may mask the pains you are getting only to replace them temporarily with other pains, and at the end of the treatment leaves you where you started it. so what is the point?
Have you been refered to an endo specialist colorectal surgeon yet.
They are a rare breed, not too many of them in the country, but with you saying you need to take Movicol for 2 years there is clearly something causing an obstruction in the intestines, colon or bowel and it needs looking at and removing.
Might be endo or a polyp or something that is stopping the normal digestive transit.
My money is on endo.
There is a list of the accredited endo centres, all of whom have endo-colorectal surgeons on their teams, and it sounds to me, that while you are waiting in no-mans-land for something to solve this, that you should ask your GP to try and refer you see one of these surgeons to discuss you case with you.
I wish you all success in getting sorted out rapidly. I have a feeling the zoladex is being prescribed simply as a delaying tactic instead of surgery which is what you do need.
We have seen it many times on here, that GnRH drugs are prescribed when they are not the most appropriate treatment, simply because the surgeon is not able to handle the complexities of your case.
Thank you I appreciate that detailed advice & information.
Everything you say is exactly what I think about the situation & I’ve been fighting to get someone to actually look at my bowel issue post op for 2 years now.
I checked the link also however the Gyne Consultant I saw *is* one registered on the BSGE Provisional Endometriosis Centre list so I’m just really not sure what to do as apparently not only did he write to me to tell me to commence the injections but gave the same to the Practice Nurse who faxed his secretary.
I clearly need a 2nd opinion as although the Nurse does not want me to go ahead the G.P is not bothered but I’m running out of money to keep going privately.
I just need to find someone who will give an honest approach & care about *what is going on inside before palming me off with more meds.
Hi Moonwish, i hope you don't mind me posting this to you, i just felt that i should share this info with you.
have you ever heard of a condition called addisons disease? It is when your cortisol is low......you don mention if your cortisol is low or high in your post.
i started with Endo symptoms out of the blue three years ago and while i was going through the processes of elimination with my gp which included scans and various blood tests, my parents told me that my granny has a condition called addisons disease and this disease includes similar symptoms and they were wondering if that's what i had. You can read up about it on the nhs site and other various websites.
turns out i don't and it is Endo that i have.......but maybe it is something you should rule out with your gp? If it is Addisons disease then there is a daily tablet that gives your body back what it needs thus taking the symptoms away.
you shouldn't take zoladex until you have established what condition you have and what affect positive or negative zoladex will have on your condition.
Thank you yes I do know about Addison’s as both my maternal Aunts have it.
Both went through their 20’s,30’s & 40’s being diagnosed with Gyne problems - one had an early hysterectomy. However both were *late* diagnosed with Addison’s aged 48 & 52yrs.
I’ve raised this issue with a prior Endocrinologist, a fertility specialists Endo Gyne & several G.P’s who all gave me the *Hmmm self diagnosing* chats.
I got my out of range adrenal results via private testing in may via a private G.P but he just sat on the results & did not alert either myself of my NHS G.P I had to chase the lab for weeks to get a copy.
So I’m now looking for reliable Endocrinologist to look at my past bloods & adrenals plus current symptoms - however It’s very hard to know who to go to either NHS or Private & as I don’t have insurance I need to make the right call as I’ve wasted a lot of money since January trying to get help from the wrong people.
It's one of the family of GnRH drugs sometimes prescribed to pause endo for a few months, by shutting down the ovaries.
Same as Lupron, Prostap, Decapeptyl etc etc
they are also used to battle prostate and advanced breast cancer.
It doesn't cure it, and has many complications associated with it.
Very heavy duty meds, and they are given every 4 weeks by an implant in to the tummy or thigh, some of the drugs are given every 3 months, some just by injections. Zoladex though is every 4 weeks by tummy implant.
I wish I’d asked on here *before* I saw my Private Endo Gyne as I would have said NO in the appt.
It was my G.P Practice Nurse that flagged up the issues to me & declined to give it at this time - although the Consultant is still adamant I should take it.
He is part of BSGE too so in my case I’m not sure where to get a 2nd opinion.
I hope other ladies will be more cautious especially if they have other medical conditions like me.
I was reluctant to start zoladex as the risk of clots is high and my dad had a stroke at age 29 so as a result ive always had to have the mini pill instead of combined. My gp was reluctant too.
My endo gynae specialist said it would be ok but my gp decided it was on his head as he gave it and my life that i would live with the consequences. We ended up doing bloods to check my clotting capabilities and mine were fine so i went ahead for six months having regular blood pressure monitoring, but knowing i had a great gp who would see me any time. I was very scared and the fact nothing happened i see as lucky.
The side effects were horrendous, i was off work anyway when i started but this continued until month 3 of treatment but it was sti the best decision i made. It gave me my life back, got me back to work.
I think nobody can tell you how you will respond to zoladex, the drs themselves wont know for sure.
I did lots of research before commencing and some ladies got away lightly with side effects, others like me got them all. The ladies who were prepared well for the tough times ahead seemed to be the ones who lasted the treatment as they had control over where they wanted their treatment to go next.
It sounds like you have a lot already going on and part of me sees where gynaes are coming from as think a lot of your symptoms will be helped but also seems you have a lot of grey areas that still need covering.
My advice is to get a new nhs gp with gynae background and start a fresh.
Write down all your symptoms and ailments head to toe and all your results so far. This will annoy most gps but if you sell it to them that you know they are so busy and you dont want to waste their time they are often greatful. Then use the blah blah person advised i get referred to... Nobody may have said this to you but gps will take it better than you saying i want a referral to an endo specialist etc
You could also send the same info to private endo gynae and say thank you for your consultation i found it very helpful. Thank you for taking my tia into consideration. Zoladex is definately something i would like to consider but now i have had time away from the consultation i feel i first need some colorectal input. Is there anyone you could reccomend/would you do another lap on me etc etc
Then you keep him on side as maybe useful in future but he may also give you more feedback than he would in consultation.
Just an idea.
Ask your gp to refer to you to a gastroenterology surgeon who will then link up with your gynae. As a nurse can say movicol for two years is not normal and needs a plan.
Ask for all referralls you need you should get them on nhs. Save your money for big op in case you need one or in case you are off sick.
I think the key is getting a good gp to help you liase and gather all the info.
For now pain wise have you tried a tens machine or endo diet?
Hope you get some answers soon, sorry for the waffle!xxx
I’m feeling very unwell tonight & not up to typing a long missive - however I will say:
My NHS G.P’s *are* my new G.P’s.
I’ve already been through hell with the old G.P’s post op & that went on for over 1yr & it is not at all easy to find a new practice in my area because of the stringent rules about catchments.
In my PCT area it’s all about the money spent NOT the patents welfare.
& I’m sorry but I have to just shake my heads when you say “ask for the referrals you should get them” it has not been like that at all hence the fact that I’ve now gone private for most of my medial problems.
Everything you advise to do - believe me I’ve done it.
I even carry a printed list of symptoms & outstanding medical issues now.
I’ve had some very good advice from other ladies on here (posts & PM’s) regarding Zoladex & as I am actually allergic many drugs I’m not going to take that risk at this time as it’s an implant not just a tablet that can be stopped.
Additionally I’m not risking taking it when I have untreated Vascular issues. Plus my blood pressure is already high at the moment.
I did not prior know about Zoladex & was not given proper advice from the Endo Gyne or I would have refused when he first suggested it.
I think he’s been extremely gung hoe in his approach especially with my medical history & as I was consulting him in respect of joint bowel/ gyne issues *post op*
I’ve been looking for proper medical care since October 2011 - 2 years now, but just been left to fend for myself in extreme pain, having to pay privately for alternative therapies to alleviate this.
In fact it is so bad a journalist friend has now started documenting everything.
I feel lucky my Practice Nurse was on the ball & also that I have a friend who is a Senior Nurse who has now also talked me through this issue.
I’m really glad it worked out ok for you though & hope you continue with good heath.
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