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As we get ready to launch our new support group in North Wiltshire, we hear from the new support group leader Helen about her pituitary journey so far.

Helen's story

I have always assumed I endured the same about of discomfort as any other teen growing up, so when my symptoms of headaches and fatigue presented, I reasoned my lack of energy on packing too much into my day and opted for early nights.

When puberty hit, these symptoms were still there, but mostly overshadowed by more extreme period cramps and abdominal pain, which would come and go in waves. Some days were better than others, but I justified all was the norm and quietly got on with life.

For me, the very idea in seeking medical help was not a forthcoming option. Teenage embarrassment paired with conservatism within my asian culture, meant we scarcely talk about how we felt.

Eventually, when I finally plucked up the courage to see my GP, he concluded everything was down to ‘puberty and transitioning into an adult’. He asked me to return if my problems continued to persist. Months on, I revisited and left with the oral pill in hand. These were advised and prescribed to control all the symptoms in premenstrual syndrome or PMS.

It would be years on, when I returned and mentioned my breasts were continually tender and occasionally, lactating. Again, citing problems around severe PMS, I was sent home. My next medical encounter would be around five years on, as I hoped to start my own family.

In the first instance, I was directed to come off the Pill. I was told my period would return within the first couple of months, and when they did not, my doctor and I were concerned.

This was where my deeper medical investigations actually begun. Frequent trips to the surgery, followed by ongoing hospital appointments started. Eventually, a blood test revealed high prolactin levels, confirming Prolactinoma.

Numerous visual field tests and a MRI confirmed a pituitary macroadenoma, and soon after, an ultrasound revealed a 10cm rugby ball sized cyst on one of my ovaries. All these revelations, surfacing at the same time, literally broke me, but the doctors suggesting I may never have my own family, hurt me most.

This part of my life was exceptionally difficult, both physically and mentally. The uncertainty in how my body would respond to, and cope with treatment for my macroadenoma, paired with the urgent need to remove my ovarian cyst, filled me with dread and left me helpless. I was told, even if I made a full recovery from the operation, there was no guarantee I would ovulate and be well enough to create a family of my own.

Older now and reflecting on my past struggles, I feel so grateful for all the scientific advances around fertility and pituitary conditions. Without this expert knowledge, perhaps I would not be here to share my personal journey. This Autumn, I published my own book where I talk openly about my suppressed feelings. This has become one of my most significant times in my life, as I have come to recognise the power in healing, is actually in conversing, or at least, to have an option in ‘talking things through.’

I believe, no one should struggle alone, and by coming together we can support one another.

Fundamentally, this is why I reached out to The Pituitary Foundation. Furthermore, recognising the limited support in my local area, prompted me to take action.

In November 2025, The North Wiltshire Support Group was established. Meeting four times a year, we sit alongside the other Support Groups in UK. Here, I hope to encourage people suffering with pituitary conditions, their carers, loved ones and extended family, to attend our safe space meetings. The objective is clear - It is to hear, support, and to direct help to those people who may need it, in an open and friendly, judgment-free environment. I believe, no one should struggle alone, and by coming together we can support one another.

For me, decades on, I have learned to live with Prolactinoma, a microadenoma, and am blessed with a healthy loving daughter and beautiful souled son.

I remain thankful for what I have and continue to live life with optimism.

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As we get ready to launch our new support group in Kent, we hear from the new support group leader Lauren about her pituitary journey so far.

Lauren's story

Hi, I’m Lauren, I was diagnosed with acromegaly 10 years ago. I have had numerous operations and medical therapies to ensure disease control. Consequently, I have also had chronic problems with my right eye. I was inspired to study nursing after the treatment I received from my endocrine nurses changed my life. I hope to achieve the same in my career, and this has also encouraged me to volunteer with the Pituitary Foundation.

I enjoy spending time with friends, family, and my dog, Monty!

I turned to the Pituitary Foundation to find a support group shortly after my diagnosis as Acromegaly left me feeling lonely, confused and misunderstood at times. I attended my first support group in Birmingham in 2017, which was quite a trek for me as I live in Kent. However, this was well worth the travel, the support, story-sharing, sharing and comparing experiences were life-changing. It made me feel as if I was not alone in this journey, and soon after, I had many new friends to share parts of the journey with and see if they had experienced similar things or even ask for advice!  This was the first time I had met other people face to face who shared the same illness as me, there is nothing like speaking to other people who get it.

Now I have finished my nursing studies, I am pleased to be setting up a Kent Support Group, for all the people who are newly diagnosed, mid-treatment and or are veterans of their disease.

I’m excited for people to experience these feelings of being understood, supported and connected to others, and even to share their stories to help others. All in a safe environment, that will allow people to meet and discuss their experiences.

If anyone feels apprehensive about attending a support group, I will say this is a safe space, and I will do my utmost to ensure you feel supported. Lastly, please don’t miss the opportunity to meet people who have experienced a similar journey to yourself.

Hope to see you soon, Lauren.

To mark Rare Disease Day 2025, we're showcasing stories from our community to raise awareness of rare diseases and the way they can impact people's lives. In her story, Gail Weingartner, a founding member of The Pituitary Foundation, shares her experience of being diagnosed with a pituitary condition and how this led her to kick-start what became a national support group service, offering support groups at 28 locations across the UK. ⁠
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To this day, Gail is still an acting volunteer with The Pituitary Foundation, working as a Support Group Leader for the Solent and Isle of Wight Support Group. Thank you Gail for your many years of dedication to the charity and for sharing your story!

Gail's story

I married my lovely husband Rod in October last year, who is so very supportive & understanding of my ‘pain in the botty’ pituitary condition! A key hobby for us both is riding out on our motorbikes & we do our best tackling Ceroc dancing once a week. We have a joint love of Scotland and Greece, and I practice my Greek language skills whenever possible. I started up a pituitary patient local support group in 1995 and now head the Solent & Isle of Wight group as a Support Group Leader.

I remember the awful experience (understatement) happening over several years leading up to me diagnosing myself as a pituitary patient. My personal ‘hell’ whilst thinking I was going bonkers; my GP only suggesting beta blockers and anti-depressants. That was at the end of 1992 and following transsphenoidal surgery, radiotherapy plus fighting to recover, I just knew other pituitary patients needed support and to know they were not alone; that is how I became involved as a founding member of The Pituitary Foundation.

In 1993, there was no Pituitary Foundation and I wanted to initiate something to support pituitary patients, but this would have very much been a ‘one-man band’. On contacting the Society for Endocrinology, I was invited to the national launch on 23 November 1994 and remember sitting in an ante-room with 5 other patients, chatting about how to get local support groups off the ground. I naïvely said “I’m happy to coordinate” – fatal last words! I became a trustee and, as a volunteer, took on the role of national coordinator, helping to kick-start 28 support groups around the UK and Southern Ireland.

In many respects I consider myself lucky because I do manage to lead a fairly normal life (what’s normal? 😉) and I work as a charity mini-bus driver 3 days per week. Typically though, my dear little pituitary dictates that on a daily basis I don’t honestly know how I will feel. On a good day, I can rule the world but on a really bad one, I suffer a totally dreadful hangover-type feeling (no alcoholic fun the night before though), with me in bed sleeping the day away whilst my body seems to recharge its battery. Then, there are the in-between days when I could be feeling OK, another when I’m just a little under-par or the days when I’m struggling but functioning. Of course, this does make me unreliable and I then have to cancel a social engagement, motorbike ride, dancing, etc, etc.

You will hear many pituitary patients say that because our conditions are often not visible, this makes it very difficult for ‘Joe Public’ to empathise or understand. However, we are not alone with this because many other medical conditions are also rare and non-visible.

As pituitary patients, we owe it to ourselves and to those who have not yet been diagnosed, to shout loud and clear about our conditions, take responsibility for our own bodies by doing our homework and spreading the word to educate whoever may be listening.  We do of course though, need to gauge if eyes are beginning to glaze over!👍

My role as a Support Group Leader is supported by a strong, proactive committee and is very rewarding and lots of fun too. We hold 4 get-togethers each year near Portsmouth, one every year on the Isle of Wight and bi-annually at Southampton General Hospital. We often invite speakers and also hold our (what we call) patient-led meetings, where we sit chatting and sharing our experiences, hints and tips and all things pituitary, plus we always have a laugh too. 

Being a pituitary patient can be lonely at times so I feel it can really help if we are able to reach out to others facing similar, if not the same, issues. Rod always comes along to our meetings and says he has learnt heaps from doing so. I consider myself extremely fortunate that he is so supportive.

Yes, my pituitary condition has impacted on my life hugely over the years, with a couple of examples being when my then fiancé could no longer cope with our ‘pituitary situation’ and also having to leave my employment as a Purser on Boeing 747s. Life could have been so very different but I do truly believe that I am a nicer and better person as a result of my pituitary condition (I don’t necessarily see it that way on a really rough day though 🤣).  Also, and very importantly, I have made lots of lovely friends and met some amazing people whilst treading the sometimes rough path along my pituitary journey.
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If you would like to have your story shared with our community, please contact [email protected]. Views and experiences expressed in stories of those of the community member and do not necessarily reflect The Pituitary Foundation.

Interested in joining a support group? You can see dates and locations for upcoming support groups on our Support Groups page.