Oh dear!: Hello ladies..... My story seems... - Endometriosis UK

Endometriosis UK

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Oh dear!

41 Replies

Hello ladies.....

My story seems to have come from a soap opera!

After a weekend of excruciating pain, disturbed nights and tears, I called my GP, today.

Although neither my GP or I are keen on me having GNRH, together we decided that I should try this for a month. So I am having a Zoldex injection tomorrow...... And I'm really worried.

My GP's reasoning is that I may be fortunate and only have minimal side effects and that I will get some relief form the pain. I have also been prescribed Livial 2.5mg HRT. If however the side effects are unbearable, than I do not have a second injection and then she writes to the consultant again.

Any words of wisdom or advice?

Lots if love,

Barbara x

PS The practice nurse said the injection will be in my bum.,.., I thought Zoledez was given in the tummy ?

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41 Replies
Dillweed1 profile image
Dillweed1

I can't say the side effects have been unbearable. Fatigue mainly and hot sweats but if you've got hrt you might avoid that. It's worth a try and you can always stop it if it doesn't agree with you.

in reply to Dillweed1

Thanks for your reply..... This bloody disease has made me contradict myself constantly!

X

Dillweed1 profile image
Dillweed1

Me too. I'm seriously anti drugs but here I am on all sorts! Just think when we eventually sail into our menopausal years all this will be a bad memory. X

Cat247 profile image
Cat247

Oh no. I hope it helps barb rather than make things worse. Decapeptyl is def in the bum but I'm pretty sure zoladex is in the tummy! Need to make sure they administer it correctly. The last thing you need is for it to be done wrong. Best of luck.xx

daffodil profile image
daffodil

You can have GNRH without the HRT for 6months.You are much more likely to get pain relief without the HRT. It takes 3-4 months for everything to shut down hormonally, so most doctors will allow you 6months without HRT.

Thinking of you tomorrow.xx

Good luck x

Lilly83 profile image
Lilly83

I had Prostap in my bum, with livial add back, I felt anxious and on edge, had got flushes and sore knees but that's about it x

Bokkie profile image
Bokkie

Hi Barbara, I had the injection in my tummy. It is a sort of tiny pellet that they inject. It's not too painful really (split second that's all) but you might get some bruising afterwards. It bleeds a little too. You know my Zoladex story already but I hope that it works for you. Good luck! x

Jembee profile image
Jembee

I had mine in my tummy, had 2 in total before I finally had my op!

Had really bad hot flushes they made me feel sick and night sweats! Also very achy and tired but to be honest I was expecting far worse. Good luck xx

in reply to Jembee

Can I ask you if the injection was painful? Honestly?

Did you take HRT also?

Jembee profile image
Jembee

No hrt just zoladex! In the hospital they injected me with local first. So when I went to doctors to get the nurse to administer it and she said she couldn't numb it, if I'm honest I was scared! But I didn't feel a thing when she did it. I think because of how the hospital had done it I was convinced it was gonna hurt.

It did hurt for a few hours afterwards but the actually injection itself didn't xx

in reply to Jembee

Thank you.

How are things with you now?

Jembee profile image
Jembee

Had my lap on the 1st, ovary detached from pelvic wall and lots of adhesions removed. My right ovary is still missing!

Bowel and bladder checked and nothing there. My remaining tube is fine and I'm 27 so gonna try for babies. The pain really bad ATM and my wound dressings do not want to budge I've tried everything! So I'm guessing I will just leave them on for now. Xxx the weirdest thing was no follow up which I thought was strange x

in reply to Jembee

I would have thought you needed a follow up.

I wonder where the ovary has gone? One of mine is stuck behind my uterus and the other one is stuck to my uterus and bowel.

Good luck with baby making. I am very fortunate as I have three wonderful (but mischievous ) children!

Best wishes,

Barbara x

Jembee profile image
Jembee

I know I asked them seem to think it's hidden behind scar tissue from my op I had to remove appendix, Fallopian tube and melon sized cyst. They said as I had to cut open twice that it sometimes creates more scar tissue than keyhole?

She literally said try for babies and no follow up, that was the girl that assisted not the surgeon but my discharge notes say the same!

Lacy14 profile image
Lacy14

Hey Barbara

I'm on my second Zoladex implant. No major side effects so far, the very occasional hot flush but that's about it. The injections themselves did sting ever so slightly for a brief couple of seconds, and the injection 'site' was tender for a few hours afterwards. But that's it. So not too bad at all!

Good luck with it - you will do great xx

in reply to Lacy14

Thank you Lacy.

Are you taking HRT ?

How long are you having zoledex for?

Barbara x

Lacy14 profile image
Lacy14 in reply to

Nope no HRT. First injection was 26th Feb and second was on 26th March. I'm on Zoladex for four months in total xx

in reply to Lacy14

I hope the treatment continues to work well for you.

X

Lacy14 profile image
Lacy14 in reply to

Awww thanks. Thoughts are with you too!

Sheri26 profile image
Sheri26

Good luck for tomorrow, sounds like good positive feedback, I really hope it will help you and you have some relief from it, surely it can't be any worse with what your dealing with at the moment xxxx

Brownlow profile image
Brownlow

Hi Barbara,

Sorry I couldn't reply to this last night but I only had access to my iPod touch...which Mr. Beckham picture kept crashing!!

How did you get on today? I hope it was ok in the end. I was very scared getting my first zoladex injection but it was fine. Mine was a 3 month one so the initial effects were stronger than a monthly one...I think. I was also on livial after a bit too.

Have a word with David and he can get in touch with Roy Keane so you can compare notes. Roy had a bad hip when he was at Man U a few years back. An op would have taken him out action for most of the season. Bloody minded madman that he is, he opted to get a pain killing injection...in his tummy...at half time during each match!!! When I was getting my injection I thought I was in good company...well, depending on your view of Roy boy and I'm not getting into all that nonsense now!

Hope you're doing ok. Let us know how you got on. Big hugs to you. xxx

in reply to Brownlow

How did things go for you today?

in reply to

Barbara - hope you are okay. Hope your injection goes okay. I will be injecting myself if i have IVF and not looking forward to it. That's if I am allowed IVF, now that I have these massive cysts back on ovaries. Just think of David.

Brownlow - I just just read your reply out to the fiancé, because he is a MAN U man, and he laughed and said Roy Keane was a legend, apparently he was the embodiment of Manchester United. It is incredible that he had a painkilling injection each match - that is dedication for you.

Hope you are all okay. I have a shocking bad back just after cooking dinner - so very unfit these days..!

Takre care all xx

in reply to

Oh YellowRose!

How big are the cysts? When will you know about IVF ?

I had my injection but it wasn't zoledex it was

decapepyl!

There was only one legend in Man united.... And that was David. A great football player and very nice to look at too !

Hope your back gets better soon. X

in reply to

One is 7cm and the other supposedly under 4cm, BUT, since last night, I can see the cyst protruding from my abdomen - only if I stretch back a bit - but it's very clearly there. Bit upset about that, as it must be growing fairly quickly if I can now see it from the outside. I never really believed that this could happen. Am a bit shocked but will tell consultant this week when I see him. It's a multi-septated cyst, and am a bit worried about it. The german (you know who, lol) will tell me whether he thinks i need surgery or not. I really don't want another surgery but this may have to come out.

How is your back tonight? I read your is bad. I meant to reply to tell you that I used to have lower back pain and shooting pain in my bum. I think this was caused by the large cysts and one ovarian choc cyst had actually dropped down into my POD - I think that caused the pain and pressure. But adeno also can cause this.

My back pain tonight is from complete laziness and lack of exercise on my part. I find cooking and housework so exhausting, do you? xx

Beckham is lovely, and yes, the true legend of Man U. :-)

in reply to

Oh YellowRose, I really feel for you.

I hope you get some compassion from the German doctor ! I think they may have to operate on your cysts...,, you don't want either of them popping.

My pain has been awful, I just can't get on top of it. I wake up from pain during the night. I have burning pain on my right side and severe cramping. My back has been dreadful but thankfully today it's behaving.

Are you seeing the German doc on Thursday?

in reply to

I think you could well be right Barb. Deary me, sounds like you are really struggling. I do hope you get some rest tonight. xx

Brownlow profile image
Brownlow in reply to

Sorry to hear this Yellowrose. I know what you mean about not wanting more surgery. I'll be in touch.

Beckham gets my vote too! x

Brownlow profile image
Brownlow in reply to

The hysteroscopy was ok. He removed the polyp. Need to ask him a bit more about the endometrium but results of the MRI overtook everything. Fibroid is now 6cm and many others have joined the party. The cysts are endometriomas. And now I have endo on bowel near where it was before. He thinks it's connected to my cervix. Hmmm...not good at all. I'm a bit shocked.

I'm sure you'll be seeing plenty of questions from me on the forum in the next few days!

in reply to Brownlow

Sending you big hugs Brownlow. X

Brownlow profile image
Brownlow in reply to

Thanks. Hope you get some sleep tonight. Big hugs to you too. xx

Brownlow profile image
Brownlow in reply to

Just wondering if an anti spasmodic would work for the cramps? Something like buscopan. It's really for ibs but works to stop the bowel from spasms which is essentially what your uterus is doing.

in reply to Brownlow

Can I get this over the counter or do I need a prescription?

I'll try anything!

X

Brownlow profile image
Brownlow in reply to

You can get it over the counter but try to check with your GP too in case it interferes with anything else. x

in reply to Brownlow

Oh my gosh Brownlow - can't believe this. 6cm fibroid must be very painful and the fact you have others too. Did this not show up on TV ultrasound? Must be a shock, sorry to hear this.

We are all oestrogen overloaded suffering ladies aren't we! When will this end...

Hope you too get a good kip tonight Brownlow. xx

Brownlow profile image
Brownlow in reply to

Awful kip! Hardly a wink due to overactive brain! Thankfully I can take it easy today.

The fibroids showed up on an MRI from 3 weeks ago. Grown from 3cm in December. Oestrogen overload exactly! Pain is mostly uterine cramping. It will be interesting to see if removal of polyp has any positive effect. Otherwise it's the fibroids causing pain.

Hope you both slept better than I did. At least it's a nice sunny day. xx

in reply to Brownlow

Very bad sleep I'm afraid - not severe pain but uncomfortable enough to sleep. Really struggling to get going today.

Can your fibroids be removed the same way as the polyp? Presume not? Sorry to hear you didn't sleep well either.

Brownlow profile image
Brownlow in reply to

Alas my fibroids are hanging out the back of uterus and not in uterus so no access via hysteroscopy.

Odd we all had a bad night but only to be expected I suppose. I'm just going to get up now and have a bath. x

Dillweed1 profile image
Dillweed1

Morning. Sounds like you're having a really tough time Brownlow and Yellowrose. I had fibroids before my hysterectomy too. I was in so much pain the period before my op 2 years ago I was nearly passing out at school. My cyst is causing problems now too. Can't see it but am aware of it wherever I lie when trying to sleep. Was awake nearly all night last night after the Decapeptyl shot. Heart was racing like mad, I thought at one point I was on the way out! Scary night. Hoping it's just the flare stage as I felt so good yesterday. I suppose we have to make the most of any good days. I'm trying to reduce the oestrogen dominance with diet. Lots of cruciferous veg etc. I'm sure you've all read up on the diet etc. We seem to be in similar boats! Hope you all have a pain free day. X

Brownlow profile image
Brownlow in reply to Dillweed1

Indeed, we are all having a tough time. Gosh, last night for you sounded very unpleasant. I had some very bad dreams after Zoladex injection (7 years' ago) but they went after a few days.

I also try to reduce oestrogen through diet and juicing and support the liver in doing its detoxing job.

Sorry to hear about your bad night. Hope you can take it easy today and have a better night tonight. Hugs to you. x

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