Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: BobbingAlong on February 20, 2017, 04:51:33 PM
-
Hello, I joined before Christmas and said I would write about my experience with taking Tibolone. Sorry it took me a while to pop back, but here goes....
I'm 48 and in Perimenopause. I have been on tibolone for 2 ½ years now. I started getting peri symptoms in my early forties. I'd never found a contraceptive pill that suited me, but I agreed to try again as my periods and PMT ware getting debilitating; Awful PMT, IBS (I'd never had it before), spotty, crippling anxiety, moods, tinnitus, cold fingers and toes, flushing face, low mood, energy, libido..... etc etc.
With my GP we trialled a few contraceptive pills first, changing brands to try and eliminate various side effects. Then taking them continuously to try and even out the fluctuations of my cycle etc. The pills reduced a lot of my symptoms, but like in the past, still came with side effects for me like breast tenderness, dragging lethargic mood etc.
I kept symptom diary etc, then after a year or so I asked to try HRT instead. ( I was now 45 yrs old) and I asked if tibolone was a possibility? Around 42 I had also developed a horrible condition called Lichen Sclerosus., this has a hormonal element and possibly autoimmune too, not known exactly yet. Lichen Sclerosus is most common in women who have been through the menopause. Physically it made sex very difficult until it was treated and got under-control. It also had a strong psychological impact on my libido too, even after I'd got it under control. I remember telling my GP that I loved my husband very much, but that I genuinely didn't care if I never had sex again in my life....I was sad about this. I think this additional factor was another reason why my GP may have been willing to try Tibolone for me?
So, she almost agreed, but then hesitated. Then she said we should try another HRT first. She told me to come straight back if there were any probs. I almost felt like, she had to follow a prescribing protocol? Cost and Safety I guess? Prove this standard cheap one doesn't work before patient is prescribed something off-licence and more expensive?
Anyhow, it was Premique and it was awful. It gave me headaches which was a completely new symptom/side effect for me, so I went back after 6 weeks and have been on tibolone ever since.
The first 18 months were amazing. I felt so much better, so much so that I almost wished I could have had something like this back in my 20's and 30's even; I'd never had a good time with PMT for around 10 days each month even before Peri hit.
Tibolone reduced most of my symptoms, improved energy and libido. The IBS issues which had been a big problem completely went. I had no breast pain, no swollen engorgement at PMT time, just a bit of nipple tenderness and even that didn't happen every month. I kept a careful track of any symptoms and when my periods were and there was no breakthrough bleeding.
I googled and googled and found very limited info on women taking this in peri. Sometimes I felt a bit nervous about that. But, I felt so much better. It was like a miracle!
Unfortunately though, for the last year or so, things are not so good. Either my body has adjusted to the Tibolone or, more likely, I have just entered the next phase of Peri and it's just not as effective at smoothing out all the hormone fluctuations now?
My Periods are coming every 3 weeks or so now, with the odd 5 week one thrown in. It used to be a regular 34 day cycle back in my youth. And with my periods, the IBS symptoms are back. It is the IBS, gut symptoms that really get me down. There is also a return of some of the anxiety and that causes the gut problems too, so the gut issues are sometimes popping up at other times in my cycle.
PMT symptoms are back too, but not too bad.....I can work around that. But the gut stuff impacts hugely on my life and I avoid all social activities around my period.
I'm not sure what to do about it next really. I am reluctant to stop the Tibolone as I still feel great on it most of the time and I enjoy having a libido again......but.......I just wish I didn't have to have periods anymore.
Anyhow, I was interested to see if there was anyone else out there who was taking tibolone in Peri and how they were getting along? And I also wanted to share my experiences so far for anyone else who is thinking of trying it in Peri .I know it is not usually prescribed; although maybe that will change? ( I did see mention of an on-going trial in Australia)
-
:thankyou: HORMONES >:(
10 min.s B4 I began a period I would have 'the runs' so any type of travelling was 'out' until the bleed was over. So hormones can cause gut problems. IBS became worse for me in my mid-30s ......... my GP was able to prescribe medication which saved my Life and eventually I switched to Actimel, drinking several pots each day. It certainly eases my slow transit so that my bowel opens regularly and I feel properly empty.
Buscopan can ease IBS too. It really is Trial and Error finding hormone treatments that help. Maybe your own hormones have over-ridden the doseage of the Tibolone?
-
If you're otherwise feeling great on the Tibolone, I probably wouldn't change unless you feel that taking an oral preparation might be causing/adding to your tummy issues. I would think this unlikely though after all this time - things like this attributable to oral types of HRT usually crop up early on and then settle back down further into treatment.
Peri is a horrible time. It really is a time of huge upheaval, and it sounds like you're moving into a deeper stage now. Maybe try to give things a little more time to see if things settle? I know it's tough but starting another HRT when you feel relatively good on the Tibolone could be throwing a 'wild card' into the mix that you don't need right now.
Sending you hugs! xxxxx
-
Hi
I loved just reading your story, but sorry that you're experiencing some problems
I'm just throwing out some possibilities off my head BUT there're neither proven or been told to me so always check with a gp first
Firstly I read occasionally where women take either 1/2 tablet, 1 tablet, 1.5 and some take 2 (5mg) of Tibolone. Please though research this and speak to your gp
Otherwise, maybe stay as you are but address the IBS separately, after all, HRT doesn't usually take every symptom away so maybe a few different symptoms need sorting separately
I'd love you to stay on here as you can really inspire/help women either on Tibolone or going through peri and using it x
-
Hello BobbingAlong and welcome to the forum.
Thank you for a very interesting and informative post, it was good of you to take the time to detail your story.
I think another lady is considering Tibolone in peri and the Australian trial results will be of interest to many here.
I am one if those women who experienced IBS symptoms with my periods, infact when I was younger I always felt very ill on the second day of the bleed. Obviously hormonal changes impact the working of the bowel and I do know that oestrogen speeds up gut motility which is why the usual post meno problem is constipation. Regrettably I don't have the answers to your problem but I'm sure others will be along soon with advice for you.
In the meantime I wish you well and keep posting.
K.
-
Thank you for all your replies.
Hi CLKD,
I hadn't heard of buscopan, so will go and read what that one is. it's always useful to hear what worked for others. I've tried Actimel before, but didn't notice a difference. I maybe didn't use it for long enough though. My kids are like a plague of locusts if they notice anything new and sweet in the fridge and it got a bit pricey with everyone insisting they had to drink it daily too! (Maybe I should have hidden it in the salad drawer??!!)
I have been prescribed an anti-spasmodic, mebeverine, which does offer a little relief for the IBS cramps.
Hi Tempest ... you know, it's good just to get a bit of empathy and hear someone say out loud that “peri is a horrible timeâ€! I do tend to agree that it is probably best to stick with the Tibolone for a while longer as it took a lot of experimenting with Oral Contraceptives and then brief go with Premique to get to this point and each time I changed was disruptive and had its own side effects.
Which leads me to your response Annie. I feel a bit excited about that idea, I hadn't considered the possibility of upping the dose. I just assumed it came in 2.5mg and that was the only way you could take it...... google here I come to research. I'm due to go GP for annual review next month, so I can see what GP thinks too.
Hi Kathleen thank you for the welcome and letting me know that another lady on here is considering tibolone for Peri. I will look out for her.
-
Hi BobbingAlong,
I am one of the other ladies considering Tibolone in peri, though my gp and gynae are not comfortable with the idea. Your post is very informative and I am very much interested in what you are going to do from now on and how it works for you. We are guinea pigs regarding this whole pre, peri, meno and post-menopause hell, so we must stick together, learn and fight back.
I have read a post from Kathleen in another thread (Tibolone 2.5 and testosterone... ) saying that she is 60 and postmeno but still feel the hormones surges and fluctuations and a light bulb just flashened... What IF with the ovarian ageing process and our adrenals taking control of most part of sex hormones production the pattern of fluctuation changes from a, let's say "hypothalamus-hypophysis-ovaries" to a "hipothalamus-hypophysis-adrenals"pattern similar to the cortisol circadian rhythms? That would explain why during peri the fluctuations would be so erratic because both systems would be playing a part and as ovaries keep shrinking the adrenal pattern would prevail and be responsible for the surges.
This is a relatively new "symptom" if we consider the human evolution, because women were basically concieving machines without so many periods and probably not reaching the menopause. Maybe we (women and doctors) should try to learn how to deal with the adrenals instead of sticking to the "ovaries way of thinking" that is so prevalent today. They say some men think with their testicles... maybe some women think with their ovaries, but in menopause they are dying so better start thinking with the brain and the adrenals?
-
Hi MenoMale ,nice to meet you.
I'd be interested to know what your GP and Gynae 's reservations where about prescribing Tibolone in peri.
Sometimes I worry that maybe I was a bit foolish in asking to be put on it. And, later when my GP said yes, I didn't push and ask "are you sure? "what are the risks". I think at my first review after a few months I asked was it OK as I was still having periods and she said yes. Sometimes it is a bit rushed to fit eveything in a 10 minute consult. God, that sounds nuts, now I see it written down, but I didn't want to come off the tibolone.....so I didn't ask for more detail.....
I did see mentioned in a New Zealand Tibolone Info Sheet that it was regarded as a category D risk medication re pregnancy. (studies had shown foetal abnormalities in pregnant rats I think it was ) So I guess that would be a strong reason not to give it to women still menstruating? especially as it would limit their contraceptive options if they were taking an hrt.
If this is a reason/one of the reasons ? Then in my particular case, my husband has had a vasectomy, so that removes that risk in my particular set of circumstances.
I think you lost me a bit there with the "hipothalamus-hypophysis-adrenals" stuff....I am going to have to do a lot more reading and learn a bit more human biology I think!!! Lots to Learn :)
xx
-
Hi BobbingAlong,
My docs reservations are based on what they read in the leaflet... "it's for postmenopause". I have no problem re pregnancy (no partner, no sex for ages) but even if there was any chance of that, there are physical (barrier) contraceptive methods. One concern they have arisen is vascular issues in my family and the fact that I have fibroids and polyps, but then again this is a problem for any type of HRT. The thing is they want me to wait for my 12 month period-free, but last year I was going crazy and my gp prescribed me a coumpounded (NOT allowed in UK`s NHS) oestrogen, estriol and progesterone cream but I stopped after 3 months due to some allergy and lack of confidence. Now I'm just lost and hoping for the best, really! I had just one period in Dec 2015 and another on Oct 2016, so you can imagine my frustration!
I'm sorry if my "theory" is confusing ;D it is just rambling, I have Asperger's syndrome and a Biology Master's degree, I love to theorise about these matters... ::)
-
Hi Menomale and thanks for your reply. It's very frustrating indeed. In your situation, it must have been tempting to not mention the bleed in oct 2016 and then just go ahead and try the tibolone. But it is still a difficult decision to take, because there just doesn't seem to be enough info out there yet to make a truly informed choice. It seems that tibolone just hasn't been trialled on peri women yet and I would love to know why the original trials were just restricted to post-meno women and what informed the decision of the drug company to just do trials on this group? Was it the birth defect risk, was it just that 10 to 15 years ago peri wasn't really recognised as much or were there other risks than made the drug company decide to just trial and licence for after meno? I would LOVE to know!!!
I love to hear folk's ideas and "rambling"......so theorise away! I just know that I need to go off and do a bit more reading to keep up! ;)
will let u know what happens after my next hrt review in march
take care
xxxx
-
Hi BobbingAlong,
I was tempted to start Tibolone, but the vascular risks scared me, and then the ladies here trying it were describing nausea as a side effect and I just can't cope with that anymore, had nausea almost all my life before migraine attacks.
I think you're right about the lack of trial in perimenopause! Yours is the best explanation I've heard so far! Thank you! ;)
Yes, keep posting, that's the only way we have to understand what's happening to us, knowledge and communication!
Hugs!
-
Hi BobbingAlong
Because Tibolone is just one compound which breaks down into the three compounds after ingestion, then the point about not using Tibolone in peri-menopause is that it acts like any other continuous combined HRT. These do not suppress ovulation so in peri-menopause - your own cycle will break through at unpredictable times and most women do not want to tolerate this ie not knowing if/when a bleed will occur (mind you it's like this in peri anyway!). Also the dose is approx equivalent to medium dose HRT so there is less flexibility than with other HRT. From what I've read also there are some question marks over endometrial thickening on this but it is not conclusive - and I'm not sure if this would be sufficient reason not to prescribe it.
I don't think it was trialled in peri because of this ie being equivalent to continuous combined HRT although I gather from refs provided on this forum that it is being trialled for depression in peri - but not in the same way as HRT ie for menopausal symptoms generally.
Hurdity x
-
Hi BobbingAlong,
I was tempted to start Tibolone, but the vascular risks scared me, and then the ladies here trying it were describing nausea as a side effect and I just can't cope with that anymore, had nausea almost all my life before migraine attacks.
I think you're right about the lack of trial in perimenopause! Yours is the best explanation I've heard so far! Thank you! ;)
Yes, keep posting, that's the only way we have to understand what's happening to us, knowledge and communication!
Hugs!
hi, yes vascular risks are something to take seriously and that would still be a concern post meno for you with Tibolone then I guess.
Increased stroke risk is something to be very wary of. Infact your post is a timely reminder that I was going to ask for a follow up cholesterol test now that I've been on Tibolone for a while as it is supposed to lower your lipid levels, but unfortunately the good HDL gets lowered too. I had forgotten that that was something I meant to ask for as I hadn't thought about it since I first researched tibolone a couple years back.
-
Hi BobbingAlong
Because Tibolone is just one compound which breaks down into the three compounds after ingestion, then the point about not using Tibolone in peri-menopause is that it acts like any other continuous combined HRT. These do not suppress ovulation so in peri-menopause - your own cycle will break through at unpredictable times and most women do not want to tolerate this ie not knowing if/when a bleed will occur (mind you it's like this in peri anyway!). Also the dose is approx equivalent to medium dose HRT so there is less flexibility than with other HRT. From what I've read also there are some question marks over endometrial thickening on this but it is not conclusive - and I'm not sure if this would be sufficient reason not to prescribe it.
I don't think it was trialled in peri because of this ie being equivalent to continuous combined HRT although I gather from refs provided on this forum that it is being trialled for depression in peri - but not in the same way as HRT ie for menopausal symptoms generally.
Hurdity x
Hi Hurdity, yes, what you are saying sounds very reasonable. thank you for taking the time to reply.
I do worry a bit about taking something that hasn't been properly trialled for peri, but I must not necessarily then extrapolate from "not trialled yet" to "probably too dangerous and therefore we won't trial it on peri women" If you see what I mean!
Then on another level, I am not that worried as I am otherwise in good health with relatively low risk factors for complications, stroke etc.
Also, the knock on effect of the Tibolone, especially in the first 18 months, was that I felt so much better energy wise etc, that I got a lot healthier generally and exercise levels went up, blood pressure down a bit etc, etc.
xx
xx
-
Hello BobbingAlong, Hurdity, Menomale, and all the other ladies. I am new to this forum and I have just started taking Tibolone on perimenopause- just like you I am slightly worried that there is not much out there talking about Tibolone being used during perimenopause and I am not sure what to expect (i.e. Bleeding, not bleeding, does it suppress ovulation or not/risk of pregnancy).
I'm 46 years old and haven't had a period for the past 5 months - hot flushes, night sweats, mental fog, low mood and low libido are my worse symptoms. I had endometriosis (2 laparoscopies) and still have fibroid; my mum had osteoporosis (these are the main reasons why I started Tibolone).
I read conflicting information on whether Tibolone stimulates the endometrium... Do you mind sending an update on your own experiences? Have you had reviews with your GPs?
-
Hi folks and hello mmanarin
I had a review a couple of months ago and my GP was clear that she did not want to to let me continue on Tibolone. She said I had been on it longer than she had intended and wanted me to stop. I must admit, I wondered if she'd let me go on it without fully realizing that it was only for post-meno? The request to go on it came from me. I was pretty distressed about coming off it, as although it was no longer working as well as the first 18 months it was still a lot better than where I had been before. She said she was going to consult someone and get back to me, and agreed to let me have 3 more months.
I got a letter a month later requesting I come see her.
So, the letter from the consultant said I should come off it and she cited risk of endometrial cancer. I said that I really wanted to take it for the next 2 weeks as I was going on holiday and just wanted some stability. She reluctantly agreed, very reluctantly, with me saying if there was a disclaimer I'd sign it!
We discussed what next and I want to try oestrogen gel. I really don't want to take oral oestrogen or progesterone after trying dozens of COCP over the years and having bad side effects, so the only option to oppose the oestrogen seems to be the Mirena Coil. The consultant had also suggested that I could have some testosterone. I agreed with GP that we would see how I got on with the coil and the gel first and then add the Test in later if needed. Saying that, in the limited appointment time, i didn't actually ask if she was able to prescribe the Testosterone? The consultant may have suggested it, but I get the impression from things I read a while back that not every NHS Trust will prescribe it.
Anyway, getting ahead of myself.
I also joked that at least once Id got thru the meno, I now knew that I could return to Tibolone and that it suits me. She actually said that maybe not, as this consultant's letter was indicating that even for post meno, Tibolone should only be used for a short period of time and still had the endometrial cancer risk. I'm not sure what I think of this, and I'd hazard a guess that the view changes depending on who you speak to. But again, we agreed to cross that one when I get there. Things change and new info comes to light.....although very slowly it seems in the world of HRT.
I am VERY apprehensive about having a Mirena put it. Anecdotally, some women love it, and others hate it.
My GP is also away for most of June, so I wont be able to get this done until July. She is the only one who fits them in our practice. I guess that gives me a month to see how the land lies with no HRT at all.......but I'm ......apprehensive about that too.
And now I will finish with a row of sad faces :( :( :( :( :( :( :( :( :( :(
-
Hi BobbingAlong and mmanarin, welcome!
I'm sorry you had to stop Tibolone, BobbingAlong, this HRT stuff is really confusing ::)
I can't give you any advice on the new regime, only that maybe you could try Utrogestan instead of Mirena... I could not go that route myself, hate the idea of the coil!
Keep posting once you've decided!
XXX