Zoladex and Tibolone - help!!!: I just... - Endometriosis UK

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Zoladex and Tibolone - help!!!

Littlenestofvipers
Littlenestofvipers
31 Replies

I just wanted to see if anyone has shared any similar experience with me, I’m feeling completely over this whole diagnosis process!!

I have had problems with my periods for 10 years (I am now 24) very heavy, extremely painful, severe pain down my right side, vomiting, near passing out etc. I also have pain during sex and bleeding after sex, sorry if TMI!! I have been hospitalised with the pain before and still it has taken this long to be referred.

I finally got referred to gynae 4 months ago and they started zoladex and tibolone. I am about to have my fourth zoladex injection but I have been bleeding every single day for the whole 3 months that I have been on zoladex!!!! I’m exhausted. I saw my gynae last week and she didn’t have much to say apart from carry on with the injections... I had to beg her to do more tests so now I am awaiting scans and MRI. The doctors refuse to do a cervical smear, they refuse to even consider any possibility of cancer because they say it’s rare for my age... The bleeding can be light but it’s also heavy some days with clots. Anyone else had this on zoladex?

I could go on and on about all the problems and how much of a nightmare this has been so far but trying to keep this short!

They hoped by trying zoladex for 3 months they’d get an idea of whether I have endo but to be honest, the doctor now looks even more confused by my persistent bleeding and can’t give me any straight answers about anything.

31 Replies
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Dapperfly

I’m sorry- it all sounds rough for you!

I have never heard for using Zoladex to diagnose Endo?

I’m currently on Zoladex, but from the more conversations I have, I’m becoming aware the medication effect everyone very differently.

Personally so far Zoladex has helped me, but also has some side effects. The mirena coil on the other hand is like putting the devil in me!

Are you under a specialist Endo centre? I would request this and the only sure way to diagnose Endo is by laparoscopy- after all the push in the news last week they might be a GP in your doctors that’s more sympathetic x

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Littlenestofvipers

I was confused by the use of zoladex at this stage too! They refuse to do any investigations as they say I’m too young to have any invasive investigations?! I’m so confused because my life is hell, this is ruining my work life and social life so who are they to decide what is too invasive.... The doctor has tried to push the mirena coil on me so much I swear she’s getting paid advertisement fees! She’s very quick to blame this 3 month bleeding on my copper coil but I’ve had it for 3 years and it has never done this to me!!!! So stressful. I’m not sure if it’s a specialist endo centre, it’s an endo clinic within a hospital?

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leke

No, this is wrong. They need to do a laproscopy, as this is the golden ticket. Have you had this? The Zoladex is just a hormone releasing medicine, it puts you in artificial menopause.

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NW248

Registered endo centres can be found here bsge.org.uk/centre

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NW248

Tibolone is HRT so it might be that making you bleed rather than the Zoladex. Zoladex is supposed to stop all your own hormones.

So I would suggest stopping Tibolone for a while and seeing if that improves things.

How long is it since your last smear? If you've never had one, insist on one. It may be unlikely that you have cancer but it is a small check to do.

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Littlenestofvipers

I’ve never had a smear! Every doctor I’ve spoken to has refused one even told me they’d throw the test in the bin if I’m even a day under 25. All in all this whole experience with all the doctors has been horrendous.

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Littlenestofvipers

They’re swapping me from Tibolone to Femoston-conti, do you have any experience with this?

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NW248

No, I couldn't get to see my doctor when I needed to come off Tibolone so just came off myself with no alternative.

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Littlenestofvipers

I just read that you shouldn’t take Femoston-conti if you have any unexplained vaginal bleeding.... so why oh why has she prescribed it to me to fight my unexplained vaginal bleeding :(

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Crispy69

Hi, you’re not alone. I’ve had exactly the same experience. Zoladex and Tibolone didn’t work for me either. The reason you’ve been given it is because it’s a way to determining whether your Endo improves without naturally occurring oestrogen. Sounds like yours isn’t responding but you have to give it at least six months of injections to know for sure. I’ve just come to the end of mine and just had an MRI which identified deeply infiltrating endometriosis which does not respond to hormone treatment. You need to push for an MRI. I know what you’re going through, I had the same fears about cancer as you feel like something really bad is going on. I hope you get a proper diagnosis and treatment plan soon

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Littlenestofvipers

This is such a useful answer thank you! I kept searching for answers at why I’m still bleeding and just kept reading how everyone’s bleeding stopped after at least the second injection. I had a feeling there were some circumstances where it’s so severe the zoladex doesn’t work as well but when I sat with the doctor (for over an hour) she was just insistent that my coil which I’ve had for 3 years had caused this 3 month bleed 😳 I am awaiting an internal scan and if that is negative she will then order an MRI. Wish this wasn’t such a long road it feels never ending! I am about to switch this evening to Femoston-Conti instead of Tibolone, any experience with this?

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Crispy69

You’re welcome. Anything we can do to help each other through this awful illness. I only tried Tibolone. My GP could see how much I deteriorated after six months so she stopped the injections and the HRT. I bled a lot for a couple of months too.

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Chrissie66
Chrissie66
in reply to Crispy69

Hi - can I ask, had you already been diagnosed with endometriosis before you had an MRI? I know MRI lights up where the endo is when you know you have it, but the only way to diagnose it properly is laparoscopy 🤔

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Crispy69
Crispy69
in reply to Chrissie66

Hi. Yes I’d already been diagnosed via a laparoscopy and had some Endo removed. But after three months the pain came back worse than ever so I started the Zoladex. I’m lucky to have a gynaecologist who specialises in endometriosis

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Chrissie66
Chrissie66
in reply to Crispy69

It seems strange that the OP’s doctor is arranging an MRI before she’s had a laparoscopy, doesn’t it 🤔

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Crispy69
Crispy69
in reply to Chrissie66

Yep I agree. I had three laparoscopies over the course of 15 years before I had my MRI.

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Littlenestofvipers

It’s all strange. She’s done everything back to front is what it feels like!

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NW248
NW248
in reply to Chrissie66

Not strange at all. Laparoscopy used to be the only way to diagnose endo, but modern MRI machines can as well and they can see into the places the gynaes are reluctant to go with a laparoscopy. Also, as MRIs aren't invasive it is much safer, quicker and cheaper.

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Crispy69
Crispy69
in reply to NW248

Depends which country you are in. In the UK ultrasound, laparoscopy and then MRI according to NICE guidelines. MRIs are usually most effective for deeply infiltrating endometriosis. I’ve found over the years that it all depends on the experience of the person doing the ultrasound and how they position the probe.

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NW248
NW248
in reply to Crispy69

I'm in the UK and had 7 ultrasounds without them finding endo then and MRI where it was found, then a lap to remove it.

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leke

I agree with Crispy69 push for MRI and laproscopy. You are not the only one, we have all been through it. The doctors are rubbish.

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Littlenestofvipers

I am awaiting an internal scan and if that is negative then she will order an MRI. I’ve asked for a laparoscopy but I have been told it’s too invasive for someone of my age to have..... I told her I want it and it should be my choice but it fell on deaf ears. My life is being completely ruined so I’m not really bothered about having something deemed ‘invasive’

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leke

Hi, I am not too sure what they mean too young? I think you may need to get some medical legal advice, if you can. The internal scan is not the way to go, you need a MRI. The reason they don't tell you about these is because it cost them too much money..... if I was you get a second opinion elsewhere, you do have that choice... speak to a medical legal advisor...

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Chrissie66
Chrissie66
in reply to leke

MRI isn’t the way to go to diagnose endometriosis though. I’m not sure why it’s even being discussed before OP has had a laparoscopy. It’s the wrong way round, if you see what I mean.

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Littlenestofvipers

I’m not sure why she keeps saying I’m too young either. She said it’s unlikely to be severe because of my age?! Even though my symptoms are extremely severe. I have explained over and over that my Aunty’s endo went undiagnosed and she ended up having a full hysterectomy at age 30 and never had children so I’m very concerned about myself. Her response ‘the technology is much better now’ my response ‘well bloody use it then!’ Funnily enough I work in law but not in that sector, we have already considered going to PALS and are just getting everything written down properly to present to them.

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leke

Do not worry, you should be able to have kids with endo, lots of women go on to have kids. Just to let you know that hysterectomy is not the cure or solution so steer clear of that. If I were you I would go and get a second opinion, go and see someone who has had a lot of experience.

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Chrissie66

Change your doctor. The ONLY way to diagnose endometriosis is via laparoscopy. Sure, they’ll see the endo on the scan but unless you have been diagnosed before you have the scan they won’t be able to say definitively that what they are seeing is endo.

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leke
leke
in reply to Chrissie66

Yes, Chrissie66 you are right, lapo is the golden ticket, but MRI is less invasive, so if MRI show anything, then they can go further with the lapo, rather going directly to lapo, and not find anything. MRI is the less invasive tool out of all of them, apart from the scan. I do not like the tools where they have to stuff things up you and wiggle it around.

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Sunflower1968
Sunflower1968
in reply to leke

Hi ladies just wanted to say my endometriosis did not show up on an mri but did via a lap and I am very concerned that your doctors will not give you a smear test? Can you move to a different GP surgery? It’s very unlikely that an internal scan will show any endometriosis but it can check your womb and ovaries for cysts and polyps etc. I know how frustrating this must all be for you and my advice would be to ask to see a gynaecologist who specialises in endometriosis and explain all of your symptoms to them. I paid £180 to see one who I knew practises both privately and NHS and after my intial consultation I had my surgery on the nhs. I’m still not free of endo and as you can see from all the different experiences on here we are all unique and What helps one person may not help another. The most important thing is you need a diagnosis of why you are bleeding and you deserve support from both your gp and a gynaecologist who specialises in endometriosis. I have severe endo which did not show up on an mri but when I had surgery my gynea advised it was everywhere. I could not tolerate the injections at all I felt dreadful on them. I know how frustrating the journey can be for a diagnosis and then you will need to decide what to do next. I would try to see a new gp and when you do ask for a double session. The other option is to write a letter to the surgery manager as they deal with customer care and in the letter you can express everything how you are feeling and ask all the questions you remember once your home, you have nothing to lose. One last thing endometriosis UK often have webinars and have experts who offer great advice. You have a right to be heard and to be investigated correctly, my bleeding was from polyps in my womb and my endometriosis- I too had a copper coil which they removed as they said it was causing the bleeding but the bleeding continued after it was removed. Only when I had surgery was I fully diagnosed, so yes technically mine should have showed up on an mri but it didn’t. I hope that helps. You will read and hear many many different experiences on here but my advice would be to put something in writing as they have to respond to that and if no joy change your gp surgery and maybe the reason they are reluctant to operate (lap) is scar tissue as that can have its own problems later down the road. The internal scan will at least give you some information on how you womb/ovaries are and I wouldn’t rush into any surgery unless you have to Take care x

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Littlenestofvipers

This is so helpful thank you for sharing! I am currently getting quotes to go for a second opinion privately and I am also going to get a smear done privately just so I can rule that out. My mum is a nurse and she too suggested writing a letter so I will 100% be doing that. The annoying thing is now that I’ve been referred to the hospital, I can’t go to my GP as they just tell me I am now with the hospital for this problem and to wait for that next appointment. I’m also going to consider going to PALS as I feel I have been treated badly and it has not been patient led at all. I’m really happy you mentioned your copper coil, mine has been the best thing I’ve ever had and I’m not willing to give up on it just because my consultant is pressuring me into it. Every other word she says is Mirena and it’s so frustrating that she just doesn’t care what I feel! I suffer from anxiety and low moods and any sort of hormonal contraceptive is absolute hell for me - it’s just not worth risking going back to the dark place they put me in. Thank you for all your advice and sharing your story, it offers some light at the end of this long long tunnel! X

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Sunflower1968

I just wanted to add I often read on here and have heard stories of ladies who also have been treated unfairly and think it maybe due to having anxiety/low mood etc so do not feel they are taken seriously. That’s why a letter can offer a way of expressing yourself without the emotion (if that makes sense) I work within mental health and I see it first hand how consultants/gps think patients are over reacting and they could not be further from the truth. I switched from a male gynea to a female gynea too and saw a huge shift in empathy - you are entitled to a second opinion, copy the letter to your gynea too. Let them both know how endometriosis is effecting your life because unless you have endometriosis it is so hard for others to understand the impact. There is so much valuable information on this website. Oh and as for the mirena I had that for 6 months and I bled the full six months and I felt dreadful hormonally but others think it’s amazing. Again you have to find what is right for you. I know it seems like a never ending fight right now but you will get there. Take care and don’t give up until you feel listened too x

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