Considering Surgery for PMDD/PME
There are many factors to weigh when considering surgical menopause as a treatment for PMDD/PME, including medical eligibility, the likelihood of treatment success, and personal preferences. While living with a premenstrual disorder can make us feel desperate for relief - it needs to be a well considered decision. Surgery for PMDD/PME is the last line in treatment and is reserved for those who have not gained relief through the evidence-based treatments.
Is surgical menopause the right treatment for my PMDD/PME?
How do I know if I am progesterone intolerant?
What are the known risks of surgical menopause?
Will surgical menopause change my bone health?
Can you still have PMDD after the surgery?
Read about the benefits and risks of HRT here
Have other questions? Don’t forget that our FAQ knowledge-base is packed full of your questions with answers from experts!
Watch this hour long webinar which is packed full of information and advice about surgery for PMDD:
Is surgical menopause the right treatment for my PMDD/PME?
Surgery/Surgical menopause is not an easy treatment to access for most people with PMDD/PME. There are many reasons for this, not least of which is that PMDD is a relatively new diagnosis (created in 2013) and many providers have little experience working with the disorder. Among providers who do approve surgery for PMDD, the following criteria (1 & 2) usually need to be met before they will consider moving forward with more invasive treatments.
“Am I medically eligible? How do I know whether a doctor will consider referring me for surgery?”
These are discussed in more detail below:
1. Documentation of PMDD diagnosis using two months of daily ratings. Physicians who make decisions about surgical eligibility generally require a PMDD patient to have two months of daily symptom ratings (that is detailed recordings/tracking of your symptoms alongside your cycle) that show a pattern consistent with PMDD before considering advanced treatments such as chemical or surgical menopause.
Note that in order to be eligible for more invasive treatments such as surgical menopause, symptoms should cause significant life impairment. It can be helpful to make notes in your daily ratings about how much your symptoms impact your ability to work, your ability to care for yourself, your ability to parent, and your ability to maintain relationships. It is also helpful to document any inpatient hospitalizations, and note if they have occurred due to PMDD.
2. Medical records showing that other, less invasive treatments didn’t work. All physicians take an oath to “do no harm” with their treatments-- they never want to expose people to greater physical risk as a result of their treatments. Since surgery brings greater physical risks than most other medical treatments, surgeons making decisions about surgical treatment of PMDD are often quite concerned about whether they might be “doing harm” to you by approving surgery, and about whether they will be held responsible if the surgery does not work for you. Because of this, they want to make sure that you have tried all other options before going under the knife. In order to document this, surgeons often require that you gather medical records showing that you’ve tried several of the less-invasive first-line treatments that have been shown to work better than a sugar pill in clinical trials for PMDD, such as SSRIs and drospirenone-containing oral contraceptives, and that you still experience unmanageable symptoms despite these treatments. It is also a good idea to continue to use daily ratings (tracking your symptoms daily) as noted above to document how symptoms change (or do not change) in response to these treatments.
Note that this requirement may be somewhat less extensive in the UK.
As part of this process, doctors often also try to treat other co-occurring disorders that you may have in addition to PMDD, such as major depressive disorder (MDD) or generalized anxiety disorder (GAD). If they do this, rest assured that they are not saying that you don’t have PMDD-- they are trying to reduce your suffering overall by tending to these other, more chronic symptoms that may worsen or complicate PMDD.
3. If approved by your physician, you will also need to complete an assessment visit with the surgeon to review your other medical history and make sure that advanced treatments that cause a menopausal state are safe for you. Some individuals may be unable to safely undergo surgery, and this needs to be evaluated during this process.
4. Documentation of a chemical menopause trial using GnRH analogues. Before a doctor decides to move forward with surgical intervention for PMDD, they usually want to use temporary medications to “test out” menopause moving on to surgery. This process is detailed below:
The reason that surgical menopause is effective for PMDD is that it eliminates cyclical hormone changes, which prevents the hormone-sensitive (PMDD) brain from having adverse cyclical PMDD reactions. In order to test whether surgical menopause will be an effective treatment for you, it is wise to test out how you will respond to a menopausal hormone state. The best way to test out whether a menopausal state is right for you is to undergo a “reversible chemical menopause trial” in which medications called “GnRH analogues” are given to temporarily shut down your ovaries (which stops your hormones from fluctuating). It is fully reversible-- once you decide to stop the medication, your hormones will resume cycling as normal. If symptoms go away or improve vastly during this temporary “reversible chemical menopause trial”, this is a sign that surgical menopause may be a treatment option for you.
Note that not all doctors require this, but most do.
Note that if for some reason these medications do not successfully prevent ovulation and you continue to have hormone cycling (and symptoms), you and your doctor may still decide that surgery is the right option.
Generally speaking, surgeons become much more comfortable with the prospect of surgical treatment for PMDD once the four points above have been addressed.
Other considerations
Your Personal Needs and Preferences
Of course, your own preferences and personal situation are very important in making a decision. We understand that many people with PMDD/PME are desperate to escape the relentless cycle of PMDD/PME, it is important to realize that this surgery is a big and irreversible decision. It will be life-changing. The decision to undergo such major surgery needs to be fully thought through by you and made in conjunction with your doctor/health-care provider. All risks and benefits of the surgery (and life following the surgery) should be explained to you in full.
If you would like to speak to others in the same situation, you can join our Facebook peer support group, ‘IAPMD - PMDD, Oophorectomy, Hysterectomy, & Life After Group’. You can also reach out to our peer support team who can help you talk you through your concerns. It’s free, confidential and manned by trained volunteers with lived experience of PMDD and/or PME.
Do not be afraid to ask questions.
It is important that you learn about the procedure/s and what it means for your health in the long term. This will allow you to make a decision based on your own personal situation.
For some, it can be helpful to arrange some talk therapy to discuss your options and give you time to come to a decision on your own terms and in your timeframe.
You should not agree to this surgery unless you understand the reasons for it, and understand the pros and cons of having your ovaries removed. If you are unsure about anything, ask your doctor/health-care provider for clarification or further information.
How do I know if I am progesterone intolerant?
You will know you are progesterone intolerant if you have a negative psychological reaction (and in some cases, negative physical reactions also) to taking progestin based medications. Examples of these medications are:
Combined contraceptive pill
POP (progesterone only pill)
Hormonal IUD/coil such as the Mirena/Jaydess.
Oral micronized progesterone
Depo progesterone injection or the implanon.
Note that there is difference between progestins like the ones contained in hormonal birth control and naturally-occurring progesterone that is formed in the human body.
“Within days of taking any type of progesterone product, the drop in mood and mood swings started. I came off it, and they went away. This was repeated several times with several different products” - Patient
Micronised progesterone (such as Prometrium or Utrogestan) is identical to the progesterone made in the human body, and, for many, has fewer side effects than the progestins found in birth control pills.
In either case, studies have shown that it is often the change in progesterone-- and not the level of progesterone itself-- that triggers symptoms of “progesterone intolerance” in PMDD. It may be that, once the brain has had time to adjust to the new level of progesterone metabolites (typically one month), the symptoms will go away.
Manufactured progesterone is called progestogen in the UK and progestin in the US.
What are the known risks of surgical menopause?
There are short-term and long-term risks associated with surgical menopause and you need to fully understand these before going ahead with surgery.
Surgical Risks
Any surgery has risks including, for example: a reaction to the anaesthetic, bleeding, infection or pain after the procedure. Your surgeon will explain these to you before your surgery, before you sign the consent form. It is important to understand that surgery will only go ahead if the benefits are believed to outweigh any risks.
Psychological Effects of Surgery
While everyone’s experience is different, some people may feel emotionally upset immediately following surgery. PMDD is a sensitivity to hormone fluctuations and after surgery your hormone levels drop significantly, thus making it a difficult time for many people. Ensuring those around you understand why you are having the surgery, and having a good support network around you, are very important.
Surgery and surgical menopause is a big physical and psychological adjustment for anyone, and this should not be underestimated.
Estrogen Deficiency-Related Menopause Symptoms
Following surgical removal of the ovaries, you become post-menopausal immediately. As your hormone levels drop you may experience a sudden onset of menopausal symptoms. These may be mild, moderate, or severe depending on your particular situation. These symptoms can be minimized by taking Hormone Replacement Therapy (HRT), or alternatives [Link] if hormones are not an option following surgery.
Symptoms of Surgical Menopause include, but are not limited to:
vasomotor symptoms
Hot flushes/flashes
Night sweats
musculoskeletal symptoms
Joint and muscle pain
effects on mood or anxiety
Feeling abnormally sad or worried
urogenital symptoms
Vaginal dryness
sexual difficulties
Low sexual desire
Menopausal symptoms, as a result of estrogen deficiency, can also be long-term - but everyone is individual. Hormone Replacement Therapy (HRT) can reduce these symptoms and can be taken long-term, quite safely, by the vast majority.
Read more about Hormone Replacement Therapy (HRT) here >>
Long-term Health Risks
If you enter into surgical menopause below the age of natural menopause (around 51 years of age), then there can be an increased risk of heart disease, osteoporosis, sexual dysfunction, and dementia as a result of estrogen deficiency. However, these risks are drastically reduced by taking Hormone Replacement Therapy (HRT).
There are some studies reporting a correlation between surgical menopause and risk of early death; however, given that there are many shared risk factors between surgical menopause and early death (poorer overall health, experiences of severe stress in childhood), these, confounding factors currently make it impossible to know whether surgical menopause actually causes increased risk of early death.
The ultra-low levels of estrogen in surgical menopause can cause bothersome menopausal symptoms, but more importantly, they can reduce the length and quality of your lifespan by increasing risk of various serious health conditions. We will address each below.
For those under the age of 40 entering surgical menopause, using HRT (Hormonal Replacement Therapy) also reduces or eliminates the serious long-term health risks associated with surgical menopause, including:
osteoporosis and broken bones
cardiovascular disease (for example: heart attack, stroke)
dementia and Parkison’s disease
psychiatric disorders (for example: mood or anxiety disorders)
vulvar and vaginal atrophy
sleep disorders (for example: persistent and impairing insomnia)
higher risk of death by any cause
To summarize, surgical menopause is known to cause all of the above symptoms and health risks-- but these problems can generally be reduced or eliminated by using estrogen therapy following surgery through to the typical age of menopause (51 years). Most individuals in surgical menopause choose to continue some level of estrogen through at least age 60 to maintain symptom relief.
What if I want to avoid Hormone Replacement Therapy (HRT) due to a history of PMDD (e.g., emotional hormone sensitivity)?
We totally understand the concerns that people have when starting HRT - especially if you have a history of reacting negatively to hormone based treatments. However, HRT can help reduce or eliminate many of the physical risks that come in surgical menopause, and so it is strongly recommended that HRT is used where possible. If you choose not to use HRT, it needs to be an informed decision.
Several studies show that people with PMDD experience abnormal negative emotional reactions during hormone changes. However, recent studies ALSO show that these negative emotional reactions usually go away about one month after starting HRT. Therefore, if you can tolerate the symptoms in the first month following the start of HRT (or any changes in HRT), symptoms usually subside.
So while it can be a difficult start, many people with PMDD/emotional hormonal sensitivities can take HRT during surgical menopause.
If you’re concerned about your ability to cope with initial symptoms in the first month of HRT, we encourage you to start with a low dose and build up slowly. It is wise to be aware that this can be a difficult time of increased symptoms, and plan ahead to increase support from family, friends, and healthcare providers during this time. For example, some people are able to start HRT during a “quiet month” where there is less stress in their life. Some may also choose to see a supportive health care provider more frequently during the first month of HRT, or ask those around them to provide additional support during this time.
People in surgical menopause almost always need to take estrogen because surgical menopause causes very low levels of estrogen (lower than in natural menopause), which leads to major health risks without estrogen therapy.
If you are entering surgical menopause before the typical age of natural menopause (before age 51), experts from a variety of leading societies (linked below) strongly recommend taking estrogen at least until the age of 51, the average age of natural menopause, and to speak with your doctor to reevaluate the risks and benefits of estrogen use around that time. Most individuals in surgical menopause choose to continue estrogen therapy through age 60.
Expert Consensus indicating that estrogen is critical in surgical menopause:
NAMS 2017 Hormone Therapy Position Statement (North America)
Please note that these recommendations for estrogen in surgical menopause differ greatly from those in natural menopause, where estrogen is considered an optional method for controlling menopausal symptoms.
Need for estrogen to control symptoms in surgical vs. natural menopause: Surgical menopause is similar to natural menopause in that it can cause bothersome menopausal symptoms (hot flashes, night sweats, joint or muscle pain, increased mood or anxiety symptoms, vaginal dryness, and sexual difficulties).
Unique estrogen needs in surgical menopause (why it’s more important to take estrogen in surgical menopause): Estrogen in surgical menopause is about more than controlling the bothersome symptoms above-- it is also needed to protect against the unique long-term health risks associated with oophorectomy/surgical menopause. Because surgical menopause causes a more severe estrogen deficiency, over time it is known to increase the risk of many long-term health problems, including osteoporosis, cardiovascular disease (heart attack, stroke), Parkison’s disease, impairing mood or anxiety disorders, sexual pain or discomfort, vulvar or vaginal atrophy, and dementia. In addition, surgical menopause is linked with greater risk of early death from all causes.
Estrogen in surgical menopause greatly reduces or eliminates each of these risks, especially when it is started right after surgery.
In sum, whereas most people undergoing natural menopause can avoid HRT without much consequence to their long-term health, this is not the cause in surgical menopause. Therefore, if you choose not to use HRT in surgical menopause, it needs to be a very informed decision with knowledge of potential long term risks, and we highly recommend that you discuss your decision with a trusted health care professional.
Some individuals in surgical menopause have a personal or family history of conditions that can be affected by hormones, and thus are more concerned about HRT risks. This is completely reasonable. Although the scientific research suggests that there are fewer risks of estrogen in surgical menopause than in natural menopause (because baseline levels are so much lower), it is important to speak with a knowledgeable provider about what is best for you. There are many adjustments that can be made (e.g., lower dose, slower titration, use of alternative medications, or supplemental use of local HRT) to ensure that you are both protected from long-term health risks while also avoiding or minimizing any possible HRT risks.
Will surgical menopause change my bone health?
Menopause is associated with a reduction in bone density due to falling levels of estrogen. Estrogen helps to protect bone strength. Therefore, estrogen replacement therapy (ERT) is used in those with premature menopause to maintain bone density and reduce the risk of osteoporosis.
What level of ERT (Estrogen Replacement Therapy) do I need to maintain bone health?
In surgical menopause, the current recommendation is to maintain the level of ERT that keeps vasomotor symptoms (hot flashes, night sweats) at bay. At the present time, there is no evidence supporting a “correct” or “optimal” level of ERT dosing (or blood level of estrogen) that protects bones in everyone; it appears that the optimal dosing of ERT is unique to each individual. Therefore, experts recommend that ERT dose be adjusted on an individual basis to (1) achieve remission of menopausal symptoms (especially hot flashes and night sweats) while also (2) minimizing any risks of ERT (taking into consideration each woman’s individual risk profile).
There are lots of additional ways to protect your bone health, including staying active, weight bearing & high impact exercise, resistance exercise, and a healthy balanced diet rich in calcium and vitamin D. Quitting smoking and reducing alcohol intake are also important for reducing risk of osteoporosis.
Should I have my bone mineral density tested? How often?
Assessment of bone mineral density (DEXA scan) should be considered at the time of surgical treatment (start of surgical menopause) to evaluate your individual risk level for osteoporosis. The frequency of repeated bone density assessment should be guided by your individualized risk (e.g., not taking HRT, family history, smoking) for developing osteoporosis. Talk to your doctor about whether and how frequently your bone mineral density should be monitored.
More Information:
www.thebms.org.uk/publications/consensus-statements
www.nhs.uk/live-well/healthy-body/menopause-and-your-bone-health/
Can you still have PMDD after the surgery?
If you have just had a hysterectomy (and not a bilateral oophorectomy) you can still have PMDD post-surgery as the ovaries will still be functioning.
If you have had both ovaries removed, for those with underlying hormone sensitivities (e.g., PMDD), it is important to note that, although the removal of the ovaries prevents the monthly cyclical hormone fluctuations that may trigger brain reactions to hormones (e.g., emotional or cognitive changes), your brain will always be abnormally sensitive to hormone fluctuations, and surgical treatment will not change that. You are likely to still feel negative emotional reactions to any fluctuations caused by situations such as natural hormone depletion, HRT not absorbing properly, and changes in HRT levels/delivery methods. The aim is to get your levels steady with adequate HRT and keep them at that rate so there are no fluctuations to cause symptoms.
Since it may take quite some time to find the optimal dosages of HRT, many people with a history of hormone sensitivity still experience changes in their symptoms during this process. It does not mean that you still have PMDD - it just means that your brain is reacting to those fluctuations that are caused by a change in HRT, the natural depletion of hormones from your body, or the HRT not being correctly absorbed.
It should be noted that, in the case of PMDD, there is thought to be a time lag of about 2 weeks between hormone changes and brain reactions; therefore, frequent changes to HRT levels should be avoided, and every change should be evaluated for about one month before deciding if it is effective and tolerable.
Have other questions? Don’t forget that our FAQ knowledge-base is packed full of your questions with answers from experts!
This project was financially assisted by The Patty Brisben Foundation for Women’s Sexual Health. The views expressed herein do not necessarily represent those of The Patty Brisben Foundation for Women's Sexual Health.