Decapeptyl & tibolone - Oh Yeah! - Endometriosis UK

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Decapeptyl & tibolone - Oh Yeah!

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Hello my favourite pen-pals!

I have something good to share!!!

Lots of us have been recommended medical menopause with injections and HRT add-back to go with it.

Well, I can proudly and joyously report that I've gotten through the first two rough weeks after my first decapeptyl injection (side effects of starting included burning sensation in abdomen and high fatigue), and I feel... Drum roll... Well! Oh my goodness! I've felt sick with endometriosis for so very long, and I feel ok today.

Now, I know we all are unique, and what works for one person does not always work for another person, but I wanted to share that in some cases (eg me) - it helps a lot!

In the interest of making a complete list, I'll let you know what I'm taking/doing that is likely helping to improve the picture:

- Decapeptyl injection

- HRT add-back tibolone

- duloxetine for neuropathic pain & mood

- diclofenac anti inflammatory

- cosmocol to reduce constipation

- supplements: well woman max, ginger tablets, probiotic, peppermint oil capsules with enteric coating

- diet - avoiding resistant starches, avoiding instant coffee, avoiding milk

- work - altered hours to 2/3 time temporarily

But really, the only new things on the list are the Decapeptyl & tibolone, so I'm fairly certain these are giving me the boost of feeling well today.

I hope this helps some of the ladies who are wondering about the injections.

Of course there's the whole topic of surgery, but, for me, I'm waiting for my MRI scan & discussion of results before considering what to do on that front.

🌿🌼🌿

Update: For context, I have stage IV endometriosis, diagnosed by laparoscopy. I am awaiting advice on surgery from a gynaecologist and a colorectal surgeon at a BSGE accredited endometriosis centre.

Other update: the first period at the end of the first month on decapeptyl was hard. It was just light spotting for 10 days or so, but I really felt the swelling burning feeling of the endo in my pelvis. After the period, things seem to be getting much better again.

22 Replies

Glad it’s helping you...Are you diagnosed? As in lap diagnoses? What stage? Any adhesions?

I’m 3 months in to Zoladex, no add back.. I never take add back, I don’t see point of stopping Oestrogen to then add it back....

I don’t even feel slightly better.. In fact I feel worse! Unable to get off the sofa!

I now have a new found motion sickness! Even a short journey in car can make me want to throw up! I struggle with a seatbelt! Can’t get off the sofa! Can’t eat! Just feel so baaaaddd... Funny though, I don’t actually have a cyst or an abscess on that ovary anymore..... But I can swing my organs from side to side.. So I’m assuming the biggest problem I’m facing atm is adhesions, hence the getting worse, not better! Xx

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Hidden in reply to Heloo85

Hi Heloo, it sounds like you're going through a really tough patch right now. I wish I had answers, but all I can say is to keep on following up and self-advocating as you're already doing.

For my case, I have stage IV endometriosis, diagnosed in a relatively short diagnostic laparoscopy slot which became available when there was a cancellation. My case was too complicated to treat that day, do they recommended an MRI scan, multi-discipline meeting, then surgery. I have adhesions and endo in multiple locations.

I'm feeling "peppy" today, so daydreaming about what the meeting with the consultants might be like & what they might possibly recommend. I'm imagining telling them to go ahead with that pelvic clearance idea the gynaecologist told me about earlier (removing endo lesions, uterus, fallopian tubes, ovaries, and how about some attention to the bowel as well - maybe take a section out of that as well). I know nothing is simple in life, and an extensive surgery comes at a price. But, I'm also an optimist at heart, and I dream that a year after surgery, I could go for a hike!!! Yay! 😀 I know I should be cautious I will go one step at a time based on the info as it arrives.

Heloo85 profile image
Heloo85 in reply to Hidden

That was me 4/5 years ago! My lap lasted 5 mins.. I was sawn up then forwarded to BSGE! I don’t know how old you are, I was 31 at the time, and although severe, and had extensive surgery to correct it, I was never offered a clear out... Which I may have taken!

The last 4 years have been hard! Chronic sciatica, can’t walk as the pain shifted into my legs/bum from my back... If I’m honest, I was far from cured... I’m surprised it took so long to become a medical emergency if I’m honest... But I knew it would.. You don’t get the level of pain I’ve been in for 4 years for nothing....

As your symptoms have eased *fingers crossed* hopefully, your adhesions are not too bad, and remain that way, because I’m sure it’s been them making my life hell for 4 years, then aided and abetted the medical emergency....

I’m not severe how severe my Endo is this time.. I have, now, one nodule on MRI now the cyst went with the abscess...

I honestly do feel bad! I don’t know if I’m a wimp, or my insides are worse than I think... as said I can swing my organs from left to right! It’s peculiar but true!

Xx

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Hidden in reply to Heloo85

Hi Heloo, You're not a wimp - far from it. You've been dealing with pain for years and it's real.

Keep on sticking up for yourself, getting the diagnostics you need and any surgery you need.

I might hazard a guess that some hard-to-see endo lesions might have remained, leading to inflammation and pain, in addition to the nodule seen on MRI.

I'm rooting for you!

Heloo85 profile image
Heloo85 in reply to Hidden

I don’t think my problem has ever been Endo itself... My symptoms have never been cyclic.. I had chronic everyday back pain since 16, that did ease after the surgery at 31, but then effected bum and legs....I was sexually assaulted in my sleep, and this is how this all started! I was awoken with what I can only describe as my insides (left side) tearing..... it hurt like hell....

2 weeks later or there about, may have been a week for the infection to kick in, can’t really remember, I woke up in the middle of the night because I thought I’d wet the bed... the puddle was massive, clear fluid... I had loads of the stuff falling out the wrong whole... Then I did start peeing myself, then pooing nothing but snot! Took 6 weeks of tests, sending home from A & E with ‘viral’ sepsis, for them to realise I had a bacterial infection, and that was only discovered because I went to GUM clinic! Non-sti.

Like you was opened and shut and told stage 4 Endo referred to BSGE, who fobbed me off for another year, then went in blind! I was given no scans before surgery! None! Was just treating a cyst? That’s all I was told!

Supposedly they ‘sorted’ it after 6 hours of major surgery... To now finding out they didn’t, they did a botched job! My left side is much worse than they told me..... Lying Drs! Grr!

So now, I’m really bad and the symptoms are unrelenting! Zoladex was pointless as it’s done nothing!

At this point I’m fully expecting a colostomy bag to be honest! Xx

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Hidden in reply to Heloo85

Oh my goodness, Heloo, you've been through so much. I'm sending good thoughts your way.I'm sure that after so much, you're on top of your information and advocating for yourself at every opportunity.

I recently discovered that it's possible to request a copy of your medical records from the hospital.

I recently just got a copy of my operation notes and summary of diagnostic lap via this route.

Like you, I want full information to enable me to manage my health. And, of course, there was new info to me in the records when they arrived - I assume because the doctor's don't have the time to explain all of the details (I'm looking on the bright side). I was irritated that I had to request a copy of my medical records via their legal department (1 month wait), but I'm told that's the normal process. I would have preferred if they'd simply given me a copy rather than making me chase them around to get the info.

Anyway, I intended to say that it is possible to be "master" of your medical information. 😉

Heloo85 profile image
Heloo85 in reply to Hidden

I definitely need to obtain a copy, but at the same time, I know, being armed with all the information in the world, at this point, is not going to change much!

I already seen how much Drs panicked at this medical emergency, reluctant to do much, because even they know not much can be done....

I overheard the Drs in GAU talking in a corner about how ‘complex’ I am...

My GP, after years of fobbing my bowel issues off, for the first time, sat me down and explained that I am considered high risk for surgery...

It all eventually comes to light in the end!.... Aah, can no longer use the good’ole IBS, or fibromyalgia or anxiety.....

I honestly feel so bad, like a lot worse than I did 8 months ago, and to be fair, that wasn’t great to be honest! I don’t know where I go from here, cuz I can’t live like this anymore... The last surgery did very little... All it did was move my pain from my back/spine into my bum/legs, which made my life even more hell.. Yes I was in pain before, but at least I could walk/horse ride/remain active... The last 4 years I have struggled to hold down a part time job!

I used to wake up in pain, pass out, throw up... all at once... Now I have days of pain, days of throwing up with or without pain, and passing out with/out pain or being sick 🤣.

This disease needs to be taken seriously! It has literally ruined my entire life! Xx

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Hidden in reply to Heloo85

Oh dear! Gosh, I'm without words. You've been through a heck of a lot.

I'm sending good thoughts your way.

Heloo85 profile image
Heloo85 in reply to Hidden

My true diagnosis is ‘Stage 4 DIE sub Agressive Endometriosis’, and believe me, I ain’t bragging... And like I say, I actually ain’t sure my problems are caused by Endo, in or of itself... I don’t respond to any hormonal treatments because they may treat the Endo, but it just doesn’t treat the damage caused by Endo, the sexual assault and then the raging bacterial infection that caused, then to add insult to injury, Drs reluctant to just give me a £2 course of antibiotics, instead, just scratched their heads because my chlamydia swab was negative 🤬.I wish I wasn’t in this position! I hope you get the treatment you deserve, and along with it, get a cure! Because no one wants to be in my position! I don’t think I’ll ever be ‘cured’, in fact my gynea has told me so! Xx

635703 profile image
635703 in reply to Hidden

You help me so much with positivity!

We are in a similar place.

I don’t know what stage my Endo is but waiting for MRI and on waiting list for hysterectomy.

GP says I am short of testosterone and as my Mirena came out I need to wait. Then we will contact Gynecologist for her opinion. Livilal just guards largely against osteoporosis she said. So progesterone on the Mirena is missing and I have them in from 2006/7 - 2021. Obvs they’re been changed 😉

I am a bit worried about not knowing enough on all this - can anyone help explain it please?

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Hidden in reply to 635703

Hi Six,When you get your MRI results back, I hope you get to look at the images with the consultant. I'm a nerd, so I really enjoy understanding what the problem us, as well as possible.

When I got to see the MRI images,it was explained to me that they see liquid areas really well - so cysts and things of that type stand out.

You're short of testosterone? Did you find that out from a blood test? Just curious.

The Minera has levonorgestrel in it, which is a progestogen. It delivers it locally to the uterus where it sits.

Livial has tibolone in it, and it is used by the body to make a little bit of estrogen and some progesterone. That tiny amount of estrogen helps reduce the risk of bone loss when a woman is in injections for chemical menopause. It also helps maintain heart health. It helps to reduce menopause symptoms like night sweats and hot flushes too.

My consultant told me to keep my Mirena while I decided what to do regarding surgery because it's a 4-yr solution. So, I still have the Mirena, but also have decapeptyl injections and Livial HRT add-back.

Does that help a bit? If not, just add more questions. 🙂

635703 profile image
635703 in reply to Hidden

I was told to take out the Mirena and this one has always felt uncomfortable and was glad to get it out.

The low testosterone was from a blood test, yes.

But the tramadol has made me feel so wonderful tonight. In the sense that I have more energy as the pain isn’t there. A better quality of life.

I got ground down with the pain and I do hope this helps me.

The benefit system is awful...no income for 5 weeks and a part of it is delayed until next week. It’s been hard as I love working. Reflecting back, benefits make you vulnerable, especially with an illness or a disability. You need a PhD to claim them correctly and nobody tells you how to do it all. It’s been very frightening and I have found some wonderful people who have really helped me no end!

I am thankful for every food bank and kind volunteer. My work coach is absolutely brilliant x Thank you June for being so lovely too 💖💖

Wonderful to read!! I’m glad you’re finding some relief from the pain and monotony of endo! Long may it last!

Hey that’s great news 😀so glad you are starting to feel a bit better x

Super happy for you and cheering you on lovely! x

I've been on Zoladex injections and Anastrozole tablets for years, definitely help me. Wonderful news for you to get some relief 👍xx

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Hidden in reply to Dogmad6

Hi Dogmad,Can I ask how you've arranged to take the injections & tablets for years?

With the injections, I've generally seen the guidance I'd that 6 months is ok. And I've heard from the gynaecologist that it can be taken for longer with HRT tablets for bone and cardio health. But I've not seen for how long.

Is your strategy to take injections & tablets until menopause, or are you considering surgery?

I'm just interested to hear what options might be out there.

Dogmad6 profile image
Dogmad6 in reply to Hidden

I had a hysterectomy and bilateral oopherectomy 17 years ago. I've had extensive multiple excision surgeries. I am really too frail to undergo surgery now except in dire emergency. My GP and my endometriosis specialist are both brilliant and agreed I need those drugs and can have them.

To me it would be like denying insulin to a diabetic or something like that to take the treatment away.

Painkillers don't suit me and don't work anyway. Most painkillers aren't suitable because of health problems, e.g. I can't have anti inflammatory drugs due to having had gastritis.

So that is where I am. xx

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Hidden in reply to Dogmad6

Dogmad, That sounds really challenging. I wonder - since you've had a hysterectomy and oopherectomy, but the GnRH injections help... what could be the mechanism?

I guess I just don't understand how endometriosis works. If the ovaries are gone.... How does the injection help if the function of the injection is to suppress estrogen produced by ovaries? The injection must do other things as well if it helps. I'm pretty confused. I'm glad it's helping you, but I'm trying to understand how this endo works and not getting there.

Dogmad6 profile image
Dogmad6 in reply to Hidden

As far as I understand it, the injections work on the pituitary gland to stop it working to produce hormones generally. I'm no doctor so I could be wrong but that's how it's been explained to me. The Anastrozole tablets stop oestrogen being produced in adipose tissues.

Endometriosis can somehow work to create its own blood and oestrogen supply.

I'm not alone by any means. There are women worldwide who have post menopausal or post hysterectomy endometriosis.

We normally get ignored by the media though.

Glad it works for you. After 5 months I stopped as side effects even worse. Now I only take paracetamol for pain and betmiga for frequent peeing. Today I am nauseous weak headache fatigue and unable to lie down or move at anything other than a snail pace due to dizziness and some period pain. Thus could be a reaction to acupuncture I gad on Friday or a lingering reaction to the covid vaccination I had a couple of weeks back which has worsened some symptoms 🤔. Another tough day but good that some of you find stuff that helps

Aww June! So happy for you 👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻

Tramadol....might be working better for me....we will see.

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