My Endometriosis Journey and how having PMI changed my life - Kim Powell

I have suffered painful and heavy periods from the very first one. They were debilitating at times through my teenage years, and I was put on medication to help with pain and heavy bleeding. As with a lot of women who experience this, I was always told it was just a heavy period and put on the contraceptive pill to help my symptoms. While they did do that to an extent in my younger years, coming into my 30's things got significantly worse. The coil no longer helped my symptoms, and I was sick of taking hormones constantly and felt that my body needed a break.

I didn’t have private health insurance yet, and I was around 34 when I finally had a GP that agreed to refer me to gynaecology (NHS) after finding that I was severely anaemic due to the heavy bleeding I was experiencing.

During the 4 years that followed, I had 4 laparoscopic procedures which included investigations, excision, ablation and sterilisation, all on the NHS and although they found adhesions and a bulky uterus, they never really diagnosed me with anything. Yet my pain didn’t stop, and I was still experiencing heavy bleeding.

I remember seeing the NHS consultant again 6 months after my final ablation procedure because my symptoms were worse than ever and he actually told me: ‘we’ve done all we can for you, some people just feel more pain than others’ I just remember feeling so belittled and helpless. I knew something was wrong but was made to feel like it was all in my head.

The Challenge of Diagnosis: Why Endometriosis Takes Time to Identify and Diagnose

There are a few key reasons why endometriosis can take a long time to identify, and as you may have noticed from my story so far, I experienced quite a few of them:

Non-specific symptoms: Endometriosis can cause a wide range of symptoms, many of which are common to other conditions. These include painful periods, pelvic pain, painful sex, fatigue, and difficulty getting pregnant. This overlap makes it difficult for doctors to pinpoint endometriosis as the culprit right away.

Lack of a simple diagnostic test: Unfortunately, there's no single, non-invasive test that can definitively diagnose endometriosis. The most accurate way to diagnose it is through a laparoscopy, a minor surgery that allows the doctor to see inside the pelvis.

Delayed referral to specialists: Sometimes, primary care doctors may not be familiar enough with endometriosis to suspect it as a possibility. This can lead to delays in getting referred to a specialist like a gynaecologist who is more experienced in diagnosing and treating the condition.

Minimisation of pain: Women's pain experiences, particularly related to menstruation, can sometimes be downplayed or dismissed. This can lead to women feeling hesitant to speak up about their symptoms or feeling like their concerns aren't valid. Moreover, contraception is often seen as the means of curing most issues related to the menstrual cycle, which can help hide endometriosis symptoms.

How Private Health insurance helped me get diagnosed

In December 2019, our company health insurance moved over to Bupa and thanks to the MHD (Medical History Disregarded*) underwriting, I was able to access Cardiff Gynaecologist and booked in with Mr Penketh at Spire. I had my first appointment in January 2020. My appointment in total lasted just over 2 hours.

Mr Penketh asked me to tell him everything, from the very first period to now. He also did an examination, and I then went for a scan in a different part of the hospital. The radiographer instantly spotted areas of my uterus that were thickened and didn’t look right, along with a mass inside my uterus. He sent me back with his findings and Mr Penketh reviewed them there and then. He told me I had Adenomyosis, and he also strongly suspected Endometriosis and the mass was likely to be either a fibroid or an adenomyoma.

He just looked at me and said; ‘You’ve had enough, haven’t you?! and you’ve really tried everything, I’ll agree with that. Would you like a hysterectomy?’

The relief was indescribable, and I was incredibly emotional. I finally felt listened to and that the end was in sight.

To make sure a hysterectomy was the right way to go, Mr Penketh started me on a medication called Zoladex, this temporarily shuts down the ovaries and the production of oestrogen, so it mimics a hysterectomy and the menopause. Due to the pandemic, I was on that medication for about 9 months, but I’d never felt better!

In January 2021 I had a radical hysterectomy at the spire, removing my uterus, fallopian tubes and ovaries.

I had the surgery in the morning and was home the following day. Thanks to my private health insurance cover I had a private room, and the nurse care was exceptional. Before my surgery, Mr Penketh and the anaesthetist came to chat with me about the procedure and then Mr Penketh also came back the following day (a Sunday!) to tell me how things went. For all my procedures on the NHS, I never once spoke to the consultant while I was there for surgery.

When I went back for my 6 weeks check-up and histology results, I found out that my uterus was twice the size of a normal uterus due to the amount of adenomyosis. I had multiple fibroids in the endometrial wall, multiple cysts in my fallopian tubes and ovaries, a large adenomyoma and several areas of endometriosis stage 2. Mr Penketh said ‘wow, good riddance!’ I couldn't have put it better myself.

The initial recovery from surgery was uneventful. However, I am now in surgically induced menopause so will take medication for many years. Although these are not covered by my private health insurance they are picked up by my NHS GP. The best part, I’m now completely pain free!

*note - MHD is generally only available in larger employer/SME schemes.

What does this mean for my health insurance cover? Will I need to stay with Bupa forever as I know I have a preexisting condition?

Since I have had a hysterectomy, it is unlikely that I will experience further issues with endometriosis or adenomyosis. However, should there be any complications from the surgery, my current plan would cover them. This coverage could potentially extend to a new provider, provided I transfer my underwriting (known as Continued Personal Medical Exclusions or CPME) and have remained symptom-free for a certain period.

Regarding menopause, it is primarily managed by NHS GPs, but some insurers, including Bupa, offer benefits like consultations with menopause specialists to ensure you receive appropriate treatment.

Should you get private health insurance prior to a diagnosis?

Securing health insurance before being diagnosed with endometriosis can help reduce the financial impact of medical expenses. In the UK, private health insurers typically review your medical history during the underwriting process. They may exclude pre-existing conditions or impose premium loadings (higher costs) based on the severity of the condition.

In my experience, I was covered due to the Medical History Disregarded (MHD) underwriting. However, if you remain symptom, treatment, and advice-free for a specified period — known as the moratorium — the condition may later qualify for coverage. This is why it’s crucial to obtain Private Medical Insurance (PMI) while you are healthy, to ensure coverage for new illnesses.

Can you get private health insurance if you suspect you have Endometriosis?

In most cases, yes, you can get private health insurance even if you suspect you have endometriosis. However, there are a few things to consider:

Pre-existing condition exclusions:  Private health insurers in many countries, including the UK, typically review your medical history during underwriting. This means they might:

• Exclude coverage for endometriosis if it's diagnosed after you obtain the plan.
• Apply premium loadings (higher costs) depending on the severity of suspected endometriosis.
• Waiting periods: Many plans have waiting periods before coverage kicks in for certain procedures, including laparoscopy, which might be used to diagnose endometriosis. This means you might have to wait a specific period (e.g., 12 months) before the insurance covers endometriosis-related treatments.

Breaking down the costs: How health insurance made this all possible

Navigating the financial side of an endometriosis diagnosis can be stressful. Things you need to consider:

• Doctor Visits and Consultations: Many plans cover consultations with your GP and potentially referrals to specialists like gynaecologists. Be sure to check your plan's details for coverage specifics and any copay requirements.
• Imaging Tests (Ultrasound, MRI): Diagnostic scans like ultrasounds or MRIs can help identify endometriosis. Some plans offer coverage for these tests, but you might need a referral from your doctor and pre-authorization from the insurer.
• Laparoscopy Surgery: If a laparoscopy is needed for a definitive diagnosis, your insurance plan might cover a significant portion of the cost. This could include the surgeon's fees, hospital stay, and anaesthesia. However, carefully examine your plan for details on limitations or out-of-pocket costs like excess charges.

The cost of diagnosing endometriosis without insurance in the UK can vary significantly depending on the complexity of your case and the specific fees charged by the hospital or clinic.

Here's a bracketed range for the total cost* without insurance:

• Basic Diagnosis (consultation + ultrasound): £200-£450
• More comprehensive diagnosis (consultations + ultrasound + MRI): £850-£2,450+ (depending on MRI complexity)
• Laparoscopy Surgery: £7,000-£14,000+ (can be even higher for complex cases)
• Hysterectomy: typical range for a standard hysterectomy is between £8,000-£12,000+. Complex cases that require longer surgery or additional procedures can push the price significantly higher.

Additional Considerations:

• Pre-operative tests: You might need blood tests, scans (ultrasound, MRI) before the surgery, which add to the overall cost. Refer to the previous section on endometriosis diagnosis costs for a range on these tests. Note, you need to be very mindful because even with private health insurance there might be some tests that are not covered. Always make sure you carefully review and ask prior to take having the test done, so that you are not stuck paying for something unexpected.
• Post-operative care: While typically covered by the surgery cost, check if there are any additional charges for follow-up consultations or medications.

*Please note these are estimates and the actual costs can be higher or lower depending on your specific situation. It's crucial to get a detailed quote directly from the hospital or clinic considering the specific type of hysterectomy you might need.

Moreover, if you choose to get health insurance it's important to remember that coverage can vary between providers. Always check your specific plan details and speak to your healthcare provider or insurance company for a clear understanding of what's covered and any potential costs you might incur.

What my life would have been like without private health insurance

It takes on average 10 years to get an endometriosis diagnosis. Depending on the severity of your condition and symptoms, you may be forced to take time off work, avoid social engagements and events, encounter fertility and relationship issues, and experience a substantial decline in your day-to-day quality of life. Not only is it detrimental to your physical health, but also to your mental wellbeing.

I believe the problem begins in primary care. GPs often lack the training to recognise the symptoms of endometriosis and other gynaecological conditions, as these symptoms frequently mimic those of common ailments like IBS and depression. Even if you receive a referral, consultants are pressured to manage short waiting lists and appointment times.

Typically, your first gynaecological appointment on the NHS includes an ultrasound scan of your uterus and ovaries, which is unlikely to detect endometriosis since it tends to grow outside the uterus. For adenomyosis, accurate diagnosis depends on the radiographer’s expertise to identify changes in the lining of the uterus. If nothing is detected, you are likely to be discharged, restarting the cycle of consultation and misdiagnosis.

Moreover, on the NHS, I couldn’t choose my specialist, even though I knew the endometriosis experts in my hospital. Ironically, my private consultant also works there, but I never managed to see them through NHS services. Through my private health insurance, I had the freedom to choose my specialist because I had researched and identified the right expert for my condition.

Without private health insurance, it’s highly probable that my conditions—endometriosis and adenomyosis—would have worsened significantly. This progression is a frightening thought. It might have prevented me from enjoying activities I love, like camping, paddleboarding, and exploring nature. I also wonder about the potential impacts on my career. Ultimately, opting for a hysterectomy was a major decision, but it was undoubtedly the best choice for my health.