Decapeptyl and tiredness: Has anyone... - Endometriosis UK

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Decapeptyl and tiredness

Lily1986 profile image
19 Replies

Has anyone suffered with exhaustion after decapeptyl injection?I’m tired most of the time anyway due to the stage 4 endo but since the injection I am sleeping for 12+ hours a day and still needing more.

I had it a few years ago before surgery and think it knocked me out then too.

Also started pregabalin on a low dose at same time so could be that too but so thankful I’m signed off work (unsure if I will ever be able to return).

19 Replies
Eliade profile image
Eliade

Hi, is decapeptyl the same as Triptorelin?

They prescribed it to me too but I refused to take it for its heavy side effects. I decided to take Visanne instead that it's a treatment less invasive that is used in most of Europe's countries.

Besides sleeping a lot, what kind of side effects are you having? I hope you can cope with them 😌

Lily1986 profile image
Lily1986 in reply to Eliade

I had the first injection 2.5 weeks ago, wasn’t too keen after reading about it and remembering how I felt last time on it.

But consultant said there wasn’t a lot of choice as further surgery would only be a hysterectomy and thought it would increase pain rather than improve it.

So far I’ve still got bad pain but think that’s the nerve damage element.

All my bones are aching and feel quite bloated and swollen (more than usual). No hot sweats but that maybe because they’ve given me an oestrogen patch to wear which has given me awful skin!

How do you find the visanne? Is it an injection? Does it make you able to work? This is first time I’ve been signed off long term (since December) in 17 years of working xxx

Eliade profile image
Eliade in reply to Lily1986

I researched what Triptorelin is and I got too worried for its side effects, I was particularly scared for the bone density loss that it will cause. I already have osteopenia due to corticosteroids that I took in the past for the ulcerative colitis that I have (a chronic bowel disease) and I'm also really weak and without energy at the moment -this disease is literally consuming all my energy- so at the end I decided to not take it.

I don't hide you that I wanted to do it at first as I was too much in pain and when you're in so much pain don't think clearly, you just want the pain to be gone... and surely the triptorelin will remove the pain. But then I found out that I had an other less invasive alternative, Visanne, and I went for it ☺ Visanne is a progesterone pill (it's not a contraceptive though) that is used for the treatment of endometriosis in all Europe (EXEPT IN UK!!!) and it's really effective in reducing the endometriosis pain and lesions.

There are many women in UK who are forced to go to Europe to get it unfortunately or you can also buy it online. There's a petition in course now to make Visanne available in UK: you.38degrees.org.uk/petiti...

I'm going to start it tomorrow so I can't tell you yet the side effects that I'm having but I know it's not candy and it takes many side effects too.

I'm so sorry to hear that you're having a hard time with the Triptorelin, I really feel you 😞

Due to the coronavirus situation at the moment I'm in furlough from work for three months and I'm actually happy to do so because I'm going to start the new treatment and at least I don't need to worry about work if I feel unwell.

You made the right decision to sign off from work, you first need to recuperate your health Xxx

Lily1986 profile image
Lily1986 in reply to Eliade

Aw thank you very much that’s really helpful.

I will have a read and sign the petition. It’s so silly that they don’t have the same treatments in the UK.

It will be interesting to hear how it works for you and I wish you the best of luck.

My consultant said that because of the nerve damage and scar tissue damage I will always have pain but if we can try to get rid of the endo pain it might make things more a little bearable.

Take care,

Xxx

Eliade profile image
Eliade in reply to Lily1986

I really hope we'll get this treatment here as well, tonight I'm going to start it and see how it goes ☺

Anyway, I read your story in a previous post that you made and I'm really sorry that you went and are going through all of this, no one deserves such horrible pain 😞

I'm also in a pretty bad condition, I have a 8 cm chocolate cyst in my left ovary, 2.5 cm endometrial nodule in the rectum, adenomyosis in the uterus and lesions all around the bladder and right appendix. You can imagine the pain...

What's worse is that I developed the 8 cm cyst while I was in the second year of Mirena coil, I never had endometriosis before that! I believe Mirena made me grow the cyst, just like you.

I should have a surgery that involves the bowel too but now everything is stuck.

I hope you too will get better with the treatment and if you ever need support, drop me a message! ☺

Take care! xxx

Lily1986 profile image
Lily1986 in reply to Eliade

Thank you xx

That sounds so painful, I really feel for you & hope you get some relief soon xx

Eliade profile image
Eliade in reply to Lily1986

I edited the response of before, I added that I was too on Mirena coil and I developed the cyst while I was on that!

Take care you too and feel free to drop me a message whenever you need someone to talk ☺ Xxx

Lily1986 profile image
Lily1986 in reply to Eliade

Aw thank you and same to you.

That’s interesting, I have the mirena coil and also have a cyst growing on my remaining ovary.

The mirena has done nothing much for my pain at all, the only plus side is not much bleeding.

How have you found it? Xx

Eliade profile image
Eliade in reply to Lily1986

I can tell you my experience with Mirena was not so good and I believe it may have caused me the endometriosis.

I inserted it on March 2018 for period pain and for contraception and my body never really got used to it. I used to have prolonged spotting, the period was always painful enough for the first two days but generally the bleeding was quite light although it never stopped as it happens for most of women.

I went to have a transvaginal ultrasound in December 2019 in Italy to my private gyne (I had been having Mirena for 9 months) and my ovaries and uterus were clean, I had nothing, I didn't even know what endometriosis was. My gyne just told me it was not worth taking Mirena out, my body just needed more time to get used to it so I didn't take it out.

After seven months since the transvaginal ultrasound, in July 2019 I started to have really heavy period cramps, but I thought it was just the period.

Finally, in December 2019 I reached a point where I thought that those cramps were not normal and I decided to have Mirena's threds checked as I thought there was something wrong with it. They checked the threads and she was perfectly in place but they also sent me to have a transvaginal ultrasound. Finally, exactly ONE year after my transvaginal ultrasound in Italy, I found out to have a 8 cm chocolate cyst, an endometrioma, that was causing me that pain.

I couldn't believe that in only a year I had a 8 cm cyst formed. I had a telephone consultation with my Italian private gyne and she told me to take Mirena off immediately.

The chocolate cyst formed while I was on Mirena because you DO ovulate and menstruate. If you still get the period then you should suspend Mirena as it make your cyst grow exactly how it was for me. Unfortunately we are all different and not all the women stop having the period while they're on Mirena, I have been one of the unlucky ones 😞

My sister in low also has endometriosis but she solved her problems with Mirena, while to me it made me grow the cyst!

If you have the cyst growing while on Mirena I would suggest you to take it off and be on a progesterone only pill that would stop you from ovulate and menstruate.

What did your gyne tell you? Xx

Lily1986 profile image
Lily1986 in reply to Eliade

That’s really interesting and I’ve had my doubts about it from when they first inserted it (18 months ago during last surgery).

My gynae said I should keep it in to use as the hrt whilst having this injection and patches too.

But it has definitely caused a cyst to develop and I’m worried because I lose my ovary and both tubes in my last operation.

I will be discussing it with him in my next appointment.

Thank you for all this information I really appreciate it and I’m so sorry for all the suffering, pain and time it has taken for them to diagnose you! Xxx

Eliade profile image
Eliade in reply to Lily1986

You're welcome for the info :) if you need to have progesterone together with the patch you may suggest to your doctor to take a progesterone only pill if Mirena is causing the cyst growing further. When do you have the appointment with him?

The thing is that it didn't take long to diagnose the disease, I didn't have anything untl the December 2019, it has been no one fault but mine to have not taken the period cramps while I was on Mirena seriously. If had gone to have a transvaginal ultrasound as soon as I experienced those horrible cramps in July 2019, I would surely found the ovary cyst to be about 4 cm... instead I didn't taken it seriously and I waited until the cramps were unbearable to have myself checked... and then it was too late, I discovered to have the 8 cm cyst that has grown so much in ONLY a year :( For this reason I strongly advice you to think about if keeping or not Mirena, at least you already know that it already is making the cyst growing more.

Yesterday I started the Visanne, hopefully I won't get too many side effects!

Take care and whenever you would like to talk with someone you can text me :) XXX

Lily1986 profile image
Lily1986 in reply to Eliade

Thank you for your message, sorry for the delay in replying.

I have my next appointment in July but I wonder if I can ask my Gp to remove the mirena before then. I’m worried mine is doing the same as yours as the cyst has definitely grown.

I will keep you updated it’s been really nice to message someone who understands.

I hope the visanne treatment is going ok so far? Xxx

Eliade profile image
Eliade in reply to Lily1986

Hi Lily, I'm so sorry I didn't reply anymore, I had a really tough week. It's the first time in my life I felt so depressed that I isolated myself and didn't want to talk to anyone :(

Visanne gave me so many side effects, my mood swings were horrible and sometimes I felt crazy: I've been really depressed, angry or electric. I've been bleeding for a week and at night my daily but manageable pain becomes worse. I have had electric flashes in my head, overall at night and tickling in my bones. It's been awful, sometimes my hands and feet just wanted to move on themselves. Today it's the first day I felt better and hopefully the side effects are setting down. How are you? How are you feeling? I forgot to ask you how big your cyst is XX

Lily1986 profile image
Lily1986 in reply to Eliade

Sorry forgot to say yes it is the same as triptorerline x

Nooka76 profile image
Nooka76

I had the decapeptyl injection to stop my extremely heavy periods that are due to uterine fibroids. It was a last resort as I am awaiting hysterectomy but at the preop they found a problem on the ecg so i need to be investigated for that before they will operate. The first 2 weeks after the injection were horrendous! I had constant heavy bleeding but this settled after that time. Then the tiredness kicked in. I was asleep around 8:30 at night and never felt really refreshed. At 6 weeks i ended up in A and E with horrendous back and stomach pain and again shocking bleeding which i couldnt control. I was at the end of my tether but the week after, the bleeding stopped, no pain, bloating gone and I feel full of energy. I take 5mg Norethisterone so have had no problems with mood swings or flushes, although I always seem warmer than usual. I am due another injection next week. The side effects were worth it just to stop the periods, which were taking over my life. I think it works differently for everyone but worth a try. Mine was the 3 month injection. Maybe worth trying the 1 month version if youre unsure. Good luck.

Lily1986 profile image
Lily1986 in reply to Nooka76

Thank you very much for your reply. I am so sorry you have had so much pain and ongoing problems.

I’m so glad to hear of the relief the injection provided you with after the initial reaction to it. It’s just a shame they can’t give something that provides that type of relief permanently.

Best wishes for your future treatment xxx

Nooka76 profile image
Nooka76 in reply to Lily1986

Thank you Lily. Good luck with yours too. I cant wait for my hysterectomy so that my life is no longer ruled by these problems.xx

Eleanorbargates profile image
Eleanorbargates

Hi Lily,

I’m currently on 3 month dose of Decapeptyl. I’m waiting surgery to remove a 10cm endo cyst in my right ovary. The first two weeks were awful, I had terrible problems with my bladder. I was in terrible pains when trying to go to the loo. Apparently that’s one of the side effects. I was very tired all the time and had to have afternoon power naps to get through the day. But it’s been 6 weeks now and I have got no endo pain whatsoever. I do however have crazy hot and cold flushes, constantly. And I’m having to try and control my mood swings. But id rather the flushes then the endo pain I was in before. Surgery was meant to be on the 30th April but with everything going on in the world atm I believe it’s been cancelled. I’ve been waiting 6 months for “emergency operation”. Now will have to wait longer due to this Covid-19 outbreak.

I hope it settles down for you soon, have naps whenever you need them x

Lily1986 profile image
Lily1986

Oh no, I’m so sorry your surgery has been postponed and I hope you are top of the list after this nightmare is over!

Will they give you another injection to get you through until the surgery before symptoms start coming back?

It’s good to hear a positive story and gives me hope this phase might pass 🤞 so thank you 😊.

Good luck for your future treatment xxx

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