Injections prior to a hysterectomy??

[foosey]

I went to see my consultant yesterday, my 6 month check up after having an Endometrial ablation. The procedure has made my bleeding lighter but the pain is just the same if not worse, that was my reason for having it done. He is now saying before he will do a hysterectomy I have to have injections in my belly once a month and take HRT before he will go ahead with the operation. Has anyone experienced this before? I would be grateful for any info.

[hayls]

Hi

Yes lots of women on here have had the injections, either prostap, zoladex, deceptyl. Im currently on a course of prostap injections, had 11 doses so far and for me it was the right thing to have a bit of a break however once i started the hrt at 6 mths they stopped working as well but thats because i was given combined hrt when should have had oestrogen only. Mostly women have them before surgery to dampen down the endo, before a hysterectomy to give the doctors an idea of how they would be in menopause or just to give them a bit of a break as they are a "pause" button rather than treatment.

These are major drugs and have a lot of side effects so its not a decision to take lightly so you need to fully research them - there are a lot of posts on the forum about these drugs, try searching for prostap, zoladex, injections x

[foosey in reply to hayls]

Thanks for the info - some research is needed I see. x

[Impatient]

Yes so many of us have had them. They are cancer drugs and the side effects are as you would expect from cancer drugs ...pretty severe over a long period of time. The HRT will reduce some of the side effects but not all, and you really should do your homework because they are not a cure. They overload the pituitary gland in the brain with chemicals causing it to shut down which in turn stops the chemicals being sent to the ovaries and shuts them down too. But the pituitary gland does many things like mood control, hair growth, temperature regulation and so on. so by shutting it down to stop the ovaries and thus your periods, it also stops other things in the body from operating normally.

They are all from the family of drugs called GnRH drugs, as hayls listed the UK brand names, the other one to look for is Prostap under its American name of Lupron when you google them. (as well as using the search button this forum)

For many women these are wonderful drugs, for just as many women, they have a dreadful time on them with erratic side effects hitting at any time night and day for months on end.

If you are working, you would need to inform your emplyer that you are going on a course of chemo so that should you need to take time off at short notice you can do so without getting in to strife.

The side effects list is huge and very diverse and not like the normal side effects list you would expect with any other drug you ever will have taken before. It is unlikely you will ever have been on drugs this powerful before, and there is no point underestimating just how much of an impact they can have on day to day living.

So my advice is read up on all the brand names, and 'GnRH' by googling the name and 'side effects' or 'patient advice leaflet' etc.

You do not have to take them and should not be pressured in to taking them if you don't think you or your personal circumstance and family life could cope with you being on them. For example if you are married and the relationship is rocky..DON'T take the drug.

It can give you violent temper tantrums which you cannot control, it can make you extremely moody beyond any control, in addition to the physical side effects of hair loss, weight changes, nausea, hot flushes, cold chills, severe pains in bones and muscle, heart palpitations, blurred vision, halucinations, memory loss (in some cases permanent).

I think it is very unethical for any gynaecologist to give you an ultimatum to say "I will only give you a hysterectomy if you go on the GnRH drugs first. Remember he is on kick backs and commission from the drug company, and with the drugs costing the NHS around £500+ per monthly injection, ofcourse it in in his financial interest to have you accept these drugs, but it IS YOUR CHOICE whether you do accept having them or not. They are not necessary to have hysterectomy surgery and do not cure endo.

If you can cope with just having pain killers when you are in pain, until you can have surgery for a hysterectomy quite honestly that is what i would recommend having been forced on to the GnRH drugs when i was in hospital and not given any info about them, I cannot emphasis enough that you have the choice to start and then stop or not to start at all.

No doctor should be forcing you to have these drugs as a pre-requisite for a hysterectomy.

Totally unacceptable and you should do your homework and if you decide you don't want the drugs then you will have to be firm and say that you have read the contraindications and don't want to risk your health by taking them but that you still want the hysterectomy. If he refuses then you need to make an official complaint. He is coercing you to have an un-necessary program of drugs in exchange for the surgey you do want and that is so wrong.

You might on the other hand read through the drug info and decide that it is something you are willing to try for a month at least and that is again entirely up to you. Homework homework homework is the key, and if you do go ahead, remember to warn family, friends and colleagues of the side effects so they are not freaked out when/if your character changes and you are taken ill in weird ways.

These GnRH drugs are antineoplastic agents (another term you can look up for side effects)

and there is more on cdc.gov/niosh/topics/antine...

You are in charge of your body and what is done to it. So you have to take it seriously when seriously major drugs are proposed. If you can cope with pain meds from the GP while you wait for surgery then that is far better or your long term health quite honestly.

This is not the patient advice leaflet, simply the dictionary definition of zoladex

medical-dictionary.thefreed...

then Lupron Victims Hub has a lot of info on this family of drugs lupronvictimshub.com/index....

nwhn.org/lupron%C2%AE-%E2%8...

dailymail.co.uk/health/arti...

Zoladex patient advice leaflet (of course written by the pharmaceutical company that makes it, so it doesn't tell the whole story only what they are legally obliged to tell you.)

Lots of user reviews on the comments section of this article

lawyersandsettlements.com/a...

All the GnRH drugs (which are chemically, slightly different from one another) have the same purpose and the same sets of side effects and risks.

there is so much to read up on, it is worth spending a few hours with a pen and notepad taking notes and then coming to an INFORMED choice about whether you go ahead or not.

Antibiotics these are not. once the implant is in, you have to cope with it for 1 month what ever it throws at you, and the residue remains in your body for 4 months after that 1 month is up, even if you decide you don't want to continue. So you have to consider that just one monthly injection is a 5month drug sentence till you are free of the last remnants of the drug in your body even if the side effects do wear off quite quickly after you stop, for some ladies (and gents)certain side effects of the drug can be permanent.

I have never yet heard of a pain killer side effect being permanent, and that includes killing pain ..Sadly!!

Don't be rushed in to this, don't be conned or coerced in to it either. It is a huge decision and you must take this very seriously so you know what to expect.

[foosey in reply to Impatient]

Thank you so much for this info - the consultant actually said that the injections were needed to assess if this was a gyne problem or not - he said that if I still suffered with the same symptoms while taking it that he would need to refer me to a bowel specialist as this may be the problem - that sounds so stupid now I have just typed it out.

[Impatient]

That is true.. endo in the bowel can build up and cause an obstruction (pain, rectal bleeds and trouble with loo trips) and also adhesions scar tissue can build up around the bowel constricting it. Both will still cause problems even with the GnRH drugs shutting the endo down for a bit. And thereforyou would need a gynae surgeon and a colorectal surgeon on the team when you have the op, whereas if the problems completely subside on the drug then it is something the a simple hysterectomy would probably resolve and therefore only require a general gynae surgeon to handle.

This is for their benefit rather than yours. Ideally there should always be a colorectal surgeon on hand for every case or suspected case of endo on or in the bowel, but there is a chronic shortage of these surgeons compared to availability of general gynaecologists.

It is a bit of a cop out, to put you on expensive drugs as a risky experiment just to see if they need to book a 2nd surgeon to be on duty for your op for an hour or two. The waste of money alone is mind boggling, never mind the side effects this will be forcing you go thorugh 24/7 for months.

I do think the NHS has some spectacularly crazy ways of handling patients.

I have no idea what the going rate of hourly pay for a colorectal surgeon is these days, but I doubt it comes close to the costs of a course of GnRH therapy to see whether you need him or her to be present at the op or not.

it does to some extent factor in to your list of pros and cons for GnRH, so is certainly something to consider.

[foosey in reply to Impatient]

Thank you so much - you have been very helpful.

[colleenbird]

I'm so pleased I read this, foosey my consultant said exactly the same and I had no idea how bad I would suffer with side effects. My moods are terrible, I'm in agony, can't sleep, dieting and exercising but still piling on the weight, headaches, sore breasts, random spotting, the list is endless x

[foosey in reply to colleenbird]

Hiya - I have had the injections for 3 months now and I have to admit things have got a lot better - I am pain free - I did decide not to take the HRT along with the Zoladex though. x

[Hidden in reply to foosey]

I had a prostap injection prior to hysterectomy on sept 28th it's improved my pain, but hot flushes and moody also had some brain fog, forgetful but no horrendous side effects.

[JH21 in reply to Hidden]

Sorry to jump on, but how long after your last injection did you have your hysterectomy? Xx

[Henrikcat]

It is so good to see your post, the exact same has happened with me but I got a 3 month injection at the start of December in my hip (was told that you could only be on it for 6 months max) first few weeks was awful but now I have no pain no bleeding which for feels fantastic as I've been going through hell for many years so i go back to hospital the beginning of March.

[rainey6373]

Due to the apparent ignorance of my gynae's experience, or shall we say the acceptance that I as a white, female, married woman with a family, under 40 (aged 38), after many years of suffering was happy to under go a hysterectomy, I was not offered this. They got me into surgery and realised stuff was more serious than they thought. Everything was totally fused together. They only manged to remove my right ovary attached to an 11cm cyst. I was discharged with the option of take the pill continously, have the coil, or injections. Truth is, I appear to have been rejected! I ended up 18 months later in hospital with a bowel blockage caused by endo scar tissue. I was discharged from one hospital, because apparently my blockage had 'gone'! Only to be admitted by my doc the next day because I needed a serious op! 12 inch scar and 6 inches of bowel less, I am here, but if it were left to incompetent medical peeps, sorry to say, I would be dead! x

[Hidden in reply to rainey6373]

Oh my goodness, how are you now?

[rainey6373 in reply to Hidden]

Fully recovered, thank goodness, the staff at Hull Royal Infirmary were absolutely brilliant for care throughout my stay, and lovely, caring attitude towards my family too! Nothing was ever too much. The nursing staff could not believe that I had been through so much as I was only 40. (In total I have had 7 tummy ops, including through complications the 2 cesarean ops to have my children, one appendectomy, one umbilical hernia, one suspected hernia (turned out to be endo lumps), then the attempted hysterectomy - failed, then the major op with 2 weeks in different hospitals, it took 4 months off work for me to recover. I would have liked to have gone back earlier, but my boss & doctor were not happy. This is coming up to one year ago, and is very clear in my mind. I still remember the tubes being put down my nose and into my stomach, twice, within days, due to the first hospital discharging me! And the lack of their tracking of replacing intravenous drip tubes

[foosey]

Sorry to hear about your experience but very pleased you are now recovered.

[75elaine-12]

Thank you for info. Consultant said I'd need injections before op. But as was just out of surgery (ablation) I was too groggy to take in info lol. Gonna see him early next month. If I understand correctly this kickstarts menopause. I'm a bit scared to be honest. My mood swings are crazy already as both ovaries v damaged lol. Thanks again

[KerryKB]

I've been told the same. Coming to the end of my six months of decapeptyl and was told that unless i'm 'completely' pain free by the end of it then a hysterectomy isn't an option. If anything, my pain is now worse! I've no bleeding and managed to deal with the hot flushes (these have eased with ease injection) but gained a stone in weight! I now have no idea what is next for me. Dreading being told to go home and 'live with it' again

[Broderskim39]

Been to see my specialist and he has put me on one monthly injections before i have a hysterectomy. all depending on how i get on for the next six months with these injections if all good i will be have a full hysterectomy... I have stage 4 endo and is attached to my bowels