7 Things I Learned When I Had a Hysterectomy and went into Surgical Menopause as a 20-something, Disabled Lesbian - N. C. Arthur

Aug 2, '19

Throughout my experience I learned many things that added together gave me a very unique experience as a young, disabled, obese, lesbian, genderqueer woman, living in the South West of England with preexisting medical conditions, therefore this account may not be reflective of the every lesbian 20-something, but it’s mine.

It’s a rather long story as to how the need arose for me to have a hysterectomy, but in brief I initially had heavy bleeding that did not stop for 14 months straight and a small cyst that did not require treatment, which later grew to be 11cm. A biopsy showed ‘atypical endometrial hyperplasia’ which the oncologist explained 4 to 6 people in 10 with these results will have cancer elsewhere and the only way to diagnose is with a hysterectomy.

I had just turned 29 in August of 2018 when I had the 4 hour operation that would rob me of my chance to have biological children and would change my life forever. It’s been nearly a year and looking back I’ve realised a lot.

Quote from text. Sadly, it’s not unheard of for under 35’s to have a hysterectomy. The most common reason is due to endometriosis. If you are unfortunate enough to develop cancer there are some excellent resources with good quality information and links to charities and organisations that will offer free support and counselling. I contacted MacMillian and while very kind, they were unable to help me with counselling as I was diagnosed “precancerous cells”.

There is also great information out there about the actual operation and various versions of it, in my case a Robotically Assisted Total Laparoscopic Hysterectomy with Bilateral Salpingo Oophorectomy, but there’s something very validating to know that you aren’t alone, you aren’t the only one whether it’s not the only gay woman (of any age) or not the only 20-something woman (of any sexuality). If there was another 29 year old lesbian who had a RA-TLH-BSO as a result of abnormal endometrial hyperplasia out there then that would be the ultimate win!

Quote from text When I was first given my biopsy results, the surgeon admitted he is used to talking to women who are in their 50s, had their children and, have “had their life” and didn’t know how to advise, only that the gold standard is to have a hysterectomy.

During my pre-op assessment I was told not to have sex for the first 4 to 6 weeks after surgery because I’m healing internally, when I queried as to whether to just meant penetrative sex the nurse seemed dumbfounded and didn’t know how to respond. Even if I wasn’t gay this is outdated advice as penis-in-vagina sex is just one aspect of sex.

On the morning of my surgery I was asked to give a urine sample for a pregnancy test despite telling the nurse about my girlfriend.

Quote from text. Once I was on the ward, the nursing staff were lovely as always, but I’d just had this hugely emotional thing happen and I’m waiting around to find out if I’ve got cancer. It’s an extremely lonely experience and probably the time I felt my worst, because the regret comes and I can’t do anything about it. There is nowhere to go and no-one to talk to.

Once you do get your results – in my case I was lucky and all the cells were precancerous – you are left with this empty feeling of ‘what now?’ Was it worth it? Again, with no one to talk to and nowhere to go. I reached out to Let’s Talk, the NHS mental health team in my area, but as I’d gotten support from them somewhat recently they asked I find support elsewhere.

When I had future CT scans I’m asked when my last period was or if I could be pregnant, having to explain to a stranger every time why I’ve put N/A.

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I knew there was more than hot flushes, but I didn’t realise quite how much more and quite how debilitating it can be. Some common symptoms include: hot flushes; night sweats; difficulty sleeping; a reduced sex drive; problems with memory and concentration; vaginal dryness; headaches; mood changes; heart palpitations; joint stiffness, aches and pains

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Similar to above, there is not one HRT, it’s not like when you get low vitamin levels and you replace that vitamin, hormone replacement therapy is a whole category of different treatments, drugs, patches, creams, gels etc. What works for some might not work for someone else. Some people can’t have HRT because of complications. I was found to have endometriosis during my hysterectomy so I have to take a type of HRT that cycles 2 different hormones every 2 weeks. I still need to work on fine tuning my HRT.

Because GP’s can only be expected to know so much, especially as they would normally be prescribing to 40+ year olds, there are Menopause Clinics, but these are regional, require a referral and waiting lists vary by location. I’m yet to get to one yet, but I’m hoping for better, more specialised advice.

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As someone who has had medical problems most of their life, I understand the desire to want to be treated like normal, not to be wrapped in cotton wool and treated with kid gloves, however the human body needs time to heal and unfortunately it takes longer that most people’s patience. If you haven’t got a big plaster cast or you’re walking round showing off your scars people assume you’re well. If you don’t take time now, you’ll need twice as long later. When other peoples sympathy runs out, remember to have sympathy for yourself.

Your loved ones can be blasé towards you menopause symptoms, especially friends of your own age. For example, when you start experiencing a hot flush they will announce they’re having one too, to belittle or be supportive, you’re not sure, but either way it just irks you. Or, your Mum, who’s old enough to be in natural menopause thinks yours isn’t real because you’re not old enough yet and you should be young enough to fight off the symptoms.

Quote from text. Lastly, in order for an assessment to be made, a woman has to have her whole reproductive system removed from their body, examined and diagnosed and then, in many cases, only to be told, “you’re fine”. Those organs can’t be put back in, they can’t be donated. Those people can’t be given their future, their chance of children back. I hope research moves on to the point where more people don’t have to go through things like this and don’t have to stay up night after night weighing up the risks and benefits of their future and any potential children’s future.