A patient insight into the use of hormone implants to manage surgical menopause with particular emphasis on women with a history of severe sensitivity to hormonal fluctuations.
In January 2016 at the age of 30 I had a hysterectomy and bilateral oophorectomy.
From around the age of 18 I had endured extremely painful periods and debilitating pain due to endometriosis. As well as this, I spent my twenties trying to manage, unsuccessfully, what was wrongly diagnosed as severe PMS and a severe intolerance to progesterone. I now know this to have been undiagnosed PMDD (Pre-Menstrual Dysphoric Disorder). I was left to suffer with this for around 15 years. It had a devastating impact on my life: it cost many jobs, relationships and what are supposed to be “the best years of your life.”
I elected for surgery after rather naively believing it would put an end to the problems that had plagued my entire adult life. However, the 4 1⁄2 years since my hysterectomy have been nothing short of exhausting and extremely stressful in terms of the constant fight to receive the correct treatment.
I have tried it all. Oral oestrogen, no HRT, transdermal oestrogen in the form of patches and gels. It also took 21⁄2 years after my hysterectomy to start receiving testosterone therapy. I have had this in the form of both Testogel and Androfeme.
It wasn’t until I was introduced to hormone implants in 2018 that I began to regain my quality of life and was able to start functioning again in all areas of my life.
I was armed with nothing after my hysterectomy. No information on the importance of HRT and its vital role in managing both short-term symptoms and long-term health.
Due to my own experience, I want to arm women with everything that I have learnt so far and everything that I continue to learn.
Please find below some information that I have put together in response to questions that I frequently get asked around hormone implants. This is not only for those women who are in surgical menopause, but for those professionals who care for them and who are willing and ready to learn and understand more about helping women in surgical menopause.
I strongly feel there is a real dearth of patient-expert knowledge being shared in this particular area of women’s health.
What are hormone implants?
A hormone implant is a small, slow-release pellet containing body-identical hormones. The small pellets are inserted into the fat under the skin (usually in the abdomen or the buttock) where they become absorbed. The hormones are then released slowly over a 4-6- month period. It is an easy and quick procedure carried out under local anaesthetic.
There are 2 types of implant: oestrogen and testosterone.
Oestrogen implants are used to alleviate the majority of menopausal symptoms.
Testosterone implants are used to improve the following symptoms that can all occur as a result of the ovaries being removed:
loss of energy
poor cognitive function
Hormone implants are mostly used for women who have had a hysterectomy and bilateral oophorectomy (ovaries removed).
There is continued symptomatic improvement due to the higher serum oestradiol levels obtained
Many younger women in surgical menopause benefit from higher-dose testosterone therapy
There is an improved response when other treatments have failed
Long-term bone protection
A consistent, slow release dose directly into the blood stream causes fewer fluctuations which is particularly beneficial for women who are highly sensitive to hormonal fluctuations
The implant is usually still active and producing pre-menopausal hormone levels up to two years after the last implant. This can have a hugely beneficial effect on well-being and bone density.
Bleeding at the insertion site a few hours after implantation
Localised bruising and discomfort at the wound site for a few days
Although rare, infection at the implantation site
Although extremely rare, the implant may be rejected
Symptoms can return as the implant comes to the end of its working life (4 – 6 months)
Tachyphylaxis - after repeated implants the hormones can accumulate in the body.
Women who use implants long-term can avoid tachyphylaxis by having their hormone levels checked and should be counselled prior to commencing treatment to avoid the risks.
What is Tachyphylaxis?
Too frequent implantation or too high doses of oestrogen leads to supraphysiological oestradiol levels (levels greater than normally found in the body). This can in turn lead to the recurrence of symptoms even at these higher levels.
The recurrence of apparently oestrogen-deficient symptoms at these levels is due to the change of oestradiol levels from ‘very high’ to ‘high’ as women become accustomed to a higher threshold. Therefore, when some women request repeat implants for symptomatic relief, this can be caused by falling oestrogen concentrations rather than a deficiency of oestrogen.
You can avoid this happening by using the correct dose of hormones. The key to this is through the proper monitoring of serum oestradiol levels as well as seeking counselling for the risks prior to commencing treatment. The normal range of oestradiol during the ovarian cycle is between 100 – 1500 pmol/l, but oestradiol levels greatly exceeding these levels can be found in patients with tachyphylaxis.
Oestrogen Responsive Depression
High levels may be unnecessary and avoidable, but sometimes women with oestrogen responsive depression need even higher oestradiol levels. It is wrong to deny women further therapy as this merely makes them suffer many more unnecessary months of symptoms, particularly depression, anxiety and loss of energy. The ‘cold turkey’ treatment is not acceptable as profound depression is very common in patients who are denied further oestrogen therapy.
I have been treated by three consultants over the last two years who have all shared their medical knowledge with me. I have also spent a lot of time researching evidence-based information in order to gain an understanding of the medical side of hormone implants.
So, what it is like to actually live a life where you need hormone implants to feel well? How does it impact your life when they wear off? And how detrimental is it to quality of life when access to treatment is denied?
It is important to remember that no one woman’s experience of surgical menopause will be exactly the same as another’s. This is my experience and I am simply sharing what I have learnt so far as there is very little information out there. I am not medically trained but I do consider myself to be a patient expert.
HRT is very individual for everybody. However through my own experience, and through speaking with other women who are a similar age in surgical menopause with a history of PMDD, it is clear we all have one thing in common when it comes to HRT: we all require a higher level of hormone replacement than that of a woman in natural menopause. What’s more, we require this to be delivered in a stable, consistent manner which helps to minimise hormonal fluctuations and the side effects associated with this.
I have said many times that in order to feel well in surgical menopause I have to really work hard at looking after myself: I eat well. I very rarely drink alcohol. I don’t eat a lot of sugar. I keep hydrated by drinking lots of water. I’ve changed my lifestyle, for the better and I enjoy living healthily now. I love to run and I love how it helps my mental health.
However, feeling well, being able to run, being able to function at work and socially is not possible without my foundation – my hormone implants. It is not my cherry on top of the cake – it is the very cake itself!
When I have my implants I usually have a 50mg oestrogen pellet and 100mg testosterone pellet. People often seem surprised by this. However, apart for my last implant back in October 2019, I have been able to achieve serum oestradiol levels of around 700-900pmol/l with a 50mg pellet. The implants are accumulative and therefore my levels usually sit anywhere between 700-1200 pmol/l and I personally feel my best at around 1100 pmol/l. The idea is that I will need these at less frequent intervals over time, currently it has been every 6 months. The pellet I had in October 2019, left me hovering around 400 pmol/l. For some reason it didn’t quite kick in. I had awful, low-oestrogen symptoms when my levels were between 400- 500 and it kind of ruined my Christmas as I was left to top up with oestrogen gel which does not suit me (more about this later). I need a higher dose to be able to function and over time I have learnt what my normal range is. This is why blood tests in women in surgical menopause are important alongside symptom tracking – everyone’s normal is different. Some may feel great at 400 some may need 1000, it is helpful to understand what your normal range is.
I eventually had a top up implant in January 2020 of 25 mg oestrogen. This usually wouldn’t be advised but we needed to get my levels up to my normal range. Due to having two implants quite close together I was still in a very good range of oestrogen in April 2020 when I last had this checked by a blood test via my GP.
I, of course, also had my testosterone 100mg implant in October 2019. This worked as it usually does – which it is to say, great – and my energy levels were so good between January and April that I took up running and was able to exercise regularly for the first time in my 4 1⁄2 years of surgical menopause. However, come April I had very little testosterone left and my reading was at the very low end of normal. But this was to be expected. There should have been a simple fix: I just needed my next implant that was due at the end of April 2020.
Whilst I fully appreciate this COVID situation is unprecedented, we are now in June. Many other services are rightly being resumed and have measures in place to treat urgent patients. Yet, I am still being left to suffer.
Why is it that in 2020 a woman who is only 34 with no ovaries, who doesn’t respond well to conventional HRT, is still being denied access to this vital and urgent treatment without which she has no quality of life? I am over 6 weeks overdue for my testosterone implant. I am trying to manage with testogel but I can’t reach my normal range of high levels nor can I get any consistency.
Myself and my wife have been in constant contact with my hospital all this week. The latest news I have is that “we might be able to start face-to-face consultations in the next couple of weeks for urgent patients such as Kayleigh”. Today, it is Friday. I last left the house 6 days ago. I am exhausted. I have gone from running 3 times a week and regularly walking our dog up the Derbyshire hills to being bed ridden for 3 or 4 days a week out of 7.
My HRT is essential to my well-being and quality of life. It affects me both physically and mentally. I am tired of waking up every day knowing that my life is on hold, and for all my will and best self-care practices I am fighting a losing battle every day. It is simply exhausting. I have cried a lot and I am hiding away from the people I live with and love because I cannot cope with feeling this way after working so hard to get myself in to a good place. It is out of my control.
Unfortunately, this is a fight that I, and many other women face each time our implants are due, even long before COVID turned up. Implant appointments get cancelled for no good reason, getting hold of them in the first place is one almighty battle. Getting people to understand why conventional HRT doesn’t suit is a very frustrating battle.
So why doesn’t topping up with gel/patches/ oral HRT work?
I get asked this all the time and to be honest it is very hard to explain to someone who is not going through it.
When I used to have a menstrual cycle, I would have around a week, sometimes two weeks out of a month where I’d feel extreme emotions, extreme lows, extreme rage, panic attacks and sometimes some dark suicidal ideations. I’d binge eat, suffer with bad bloating. I’d want to sleep all day. I mostly hid all of this away for years through shame and not understanding what was happening to me.
To cut a long story short, I was suffering from what I now know to be PMDD. PMDD is a severe negative reaction to normal hormonal fluctuations.
It is not a disorder with the ovaries, but rather the brain. So, although I no longer have a menstrual cycle due to my ovaries being removed, I can still have what I call PMDD like episodes when I my HRT is unstable and I’m forced to use gels to top up. I simply cannot tolerate the fluctuations this inconsistency causes.
I find that certain types of HRT not only fail to give me a high enough dose, but they also give me too many fluctuations on a daily basis. It is this that severely affects my emotional stability and causes either extremely low moods which spiral out of control so much that I have to just ride them out, or I can have extreme rage moments where I lose my temper over nothing and display deeply shameful out-of-character behaviours.
As surgical menopause is so tough without any HRT, I have to make do with trying to manage by topping up with gels until I can get my implant as it is so important to keep my levels good to protect my long-term bone, heart and brain health.
It just seems so unfair that I do in fact have a treatment plan; one designed to vastly improve my quality of life and yet one which I cannot access consistently. Frankly, I feel that withdrawing such treatment for someone with my history is as dangerous as it is reckless.
Fortunately for me, I have a very supportive wife, some very lovely, real and caring friends. I have an understanding boss and fantastic work colleagues who put no pressure on me, and I have access to peer support with some other amazing women who are going through this. Without this support network, combined with my pure determination to put an end to this battle for other women, I’d struggle to live when my treatment is withheld – it is regrettable that the alternative has, at times, seemed so much easier.