Patient End Goal
• 58% of APPG respondents visited the GP over 10 times
One result we are looking to achieve in our mission is to see an increase in GP's taking into consideration their patient's End Goal before determining a route of treatment, rather than assuming treatment based on patient symptoms alone. Speaking with many Endo sufferers, these goals vary from trying to have children to improving quality of life by reducing pain and other symptoms.
After fighting on average 8.5 years to get a diagnosis of Endometriosis or Adenomyosis, the shock can be a lot to take in. It is often mixed with feelings of relief that they are not crazy and there is actually something wrong with them. As shown in understanding endometriosis many factors can affect a woman’s ability to cope with their personal endo symptoms. The thought of surgery to ease the pain can be an no brainer for most people after many years of suffering.
In considering the patient's End Goal , you as a HCP can work with your patients to create an optimised end goal health care plan which will work to reduce the number of women currently lurching from surgery to surgery in the hope of help. Discussing available options will allow you both to make a clear choice on the best way to get what is most important to them and for you to reduce the number of unnecessary appointments leading to treatments.
Fertility End Goal
We want you to think about endometriosis and fertility, how it can be a factor in your patient's ability to conceive. The biggest factor is the time it takes to get diagnosed; on average 8.5 years, it can be too late for some by then.
Irreparable damage can be done to major reproductive organs by long-term untreated endometriosis.
• 58% of APPG respondents would have liked fertility support and treatment but were not offered it, despite endometriosis doubling the risk of infertility. (1)
Timing
Most women will have full autonomy of their bodies and when they choose to have children. Most will have the option to use free contraception and legalised terminations, if required.
When someone has endometriosis that choice can be taken away with no consideration.
"If I'm lucky enough to have a baby, will I be well enough to care for it?"
"I'm single and gay, the Dr said keep trying, you never know!"
"I was 18 and no where near ready to be a parent, when they said now is the best time for you to try"
"I've not been with my partner long enough to be talking about having children"
"I'm not sure I want to have children with this partner"
"My work weren't understanding while I was trying to get a diagnosis, I cant take time off now to have a baby"
"I've just started Uni, how can they expect me to have a baby!"
"I've never wanted kids, my Dr doesn't believe me and keeps saying I'll change my mind"
38% of APPG respondents were concerned about losing their job
35% had a reduced income due to endometriosis.
Extract from Clair Dempsey's Photovoice Book
"Time has become an increasingly heavy burden on me since my diagnois.
I feel the pressure every aching moment. There is a ticking tock against my fertility. A time bomb no one is exactly sure of. The uncertainty surrounding my fertility plauges my relationship. As my age and condition reduces my chances of being a mother dramatically.
There is also the contiuous waiting. Waiting for hospital appointments that keep being cancelled and prostponed. Waiting for test results. waiting for answers that no doctor seems capable of answering."
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81% of APPG respondants said endometriosis has impacted their mental health negatively or very negatively.
Many times, when a surgical diagnosed is given it can be suggested that it would advisable to get pregnant as quickly as possible; especially after ablation surgery. This may not be the right time for your patient, how are you going to help them manage this?
Talking therapy can be a great way to help your patient open up and be honest with themselves about how they feel about endometriosis and how it affects their fertility. Encouraging partners to be involved in the conversation can be beneficial but not always the only answer while couple therapy can benefit the relationship going forward, it doesn't always address the problems within your patient. Offering both couples and individual therapy would be highly beneficial to the long-term mental health of your patient in dealing with both endo and its effects on them and their relationships.
Knowing your patients End Goal for treatment will help answer when is right for them.
Sticking to it will help you direct their care.
Trans men Patients
Members of the endo community all know the struggles and difficulties of getting a diagnosis and treatment. When you’re a lesbian or Trans, Female to Male, you can at times face different challenges. From understanding to simple medical checks.
If your patient is trans or non-binary, they may be thinking about or taking cross-sex hormones. Testosterone does not work as a contraceptive - if taking hormones, they will need to use other forms of contraception. These have been used to manage endometriosis and may positively impact controlling symptoms by way of suppressing menstruation. Similarly for hormone blockers, commonly used in both trans patients and endometriosis patients.
Often egg freezing is considered before beginning HRT to preserve fertility, and in the past hormones were thought to make a person infertile. There are more studies ongoing about trans masculine and trans male pregnancies, but it is known better now that conception and pregnancy is still possible after HRT.
Asking their end goal regarding children will also be beneficial to them and to their medical teams. Don't be afraid to raise the issue and offer talking therapy to encourage a long-term view on fertility. Encourage partners to be part of the conversation and think about how it will work practically.
No Children
Some patients will know children are not a part of their future. There can be many reasons for not having children, all as unique as the individual; all are equally as valid.
Dismissing your patients intend to not have children without understanding the reasons can be destructive to the bond of trust between HCP and patient. It can at times spark strong reactions in patients and should be approached with care and a need for understanding and providing adequate support.
Age should never be a reason to encourage a patient to attempt pregnancy. Patients of a young age can know their own bodies, lives and situations far better than an HCP can in a short meeting. Respect their choice.
If there is a strong reason to suspect patients decide not to have children has not been well thought out, or they are seeking extreme surgery from the start, it would always be advisable to ensure the patient is supported through talking therapy with specialists infertility and how a lack of it can impact your patient. If action is required, ensure the subject is approached with the patient calmly and reasonably to avoid any added distress.
Knowing your patient's End Goal can be a way to make sure specialist medical professionals do not drop them; it is an aim for them as well as you and a reason to not stop.
When you put quality of life as the goal the aim is to get to the best quality of life as possible; by pain reduction, by being a parent, or by treating the endometriosis without consideration.
1 Endometriosis can double the risk of infertility in under 35s. A prospective cohort study of endometriosis and subsequent risk of infertility. J. Prescott, L.V. Farland, D.K. Tobias, A.J. Gaskins, D. Spiegelman, J.E. Chavarro, J.W. Rich-Edwards, R.L. Barbier, S.A. Missmer. Hum Reprod (2016) 31 (7): 1475-1482