If you have discovered you have an ovarian cyst and want to read my personal experience of the surgery and recovery, I talk about it below, but first I thought some people might find it useful to read how I discovered I had an ovarian cyst and what it was like living with it while waiting for surgery.

If you would rather skip the history of how I discovered I had an ovarian cyst and my experience waiting for it to removed you can jump straight to the sections on what my ovarian torsion felt like, or recovering from ooophrectomy open surgery (click on the underlined words to jump straight there).

From Discovering an Ovarian Cyst to Dealing With Emergency Ovarian Torsion Surgery

Discovering I Had a Large Ovarian Cyst

In May 2025 I went to my GP utterly fed up with a whole long list of symptoms which perfectly matched peri-menopause (other than an absence of hot flushes). I was thoroughly miserable and couldn’t cope any more. I was unable to focus on work, I would lie awake for hours at night and I was shouting at my family all the time because I would go from feeling calm to full of rage in a blink of an eye. The doctor sent me for blood tests to look for deficiencies and thyroid functioning. The results all came back ok.

I went back and saw another doctor. This one said yes it did sound like peri-menopause and I should have a blood test to check my FSH and LH Level because I was only 43.  To complicate matters, I was on the progesterone only pill to prevent migraines so I would have to come off that, wait 6 weeks and then have the blood test. Which I did. I later discovered that when having these blood tests (and you have periods) you should aim for the beginning of your cycle. Do not have the blood tests when you are ovulating because on these days your hormone levels are nothing like your baseline and make you look like your ovaries are in full working order. 

Anyway they refused HRT and after waiting some time for advice from Gynaecology my GP referred me for an ovarian ultrasound in mid November (6 months after I pleaded for help about the peri-menopause symptoms). 

So,  going back to coming off the mini pill in May, my periods and cycle returned and with them I got intense pain when ovulating. I remember having middle pain (sometimes called Mittelschmerz or ovulation pain) in my 20s. It is an intense pain, very localised to whichever side I was ovulating that month, but it lasted an hour or two at most. This new pain was worse and lasted longer, but I wasn't too worried as I assumed it was the same thing. On May Bank Holiday we were out for a walk and I developed a one sided pain which was bad enough I struggled to walk. I went home and spent the rest of the day in bed with a hot water bottle. A couple of months later I had it again: I was meant to be taking my children camping and instead I spent the morning curled up in bed, in too much pain to pack. But then, around lunch time, it eased and I was fine.

My First A&E Visit 23rd November

Over the next couple of months I would get pain on the left side around my ovulation date, but not during every cycle (which was handy because my cycles had returned with a frustratingly short length of 21 days). It was painful but didn’t last longer than half a day. In November, the pain came and lasted a couple of days. It was the first time it lasted so long, but I assumed it was still caused by ovulation.

It eased before coming back when I was in bed a few days later. The night it returned I was rolling around in pain in the early hours of the morning. When it was an acceptable time to wake my family I asked my partner to take me to A&E. I struggled to get dressed it was so painful. By the time my partner had persuaded my younger children to get dressed and leave the house, the pain was easing. By the time we got to hospital I just had a shadow of the pain, where it had been now felt like it was ice cold (although obviously it wasn't).  I was still concerned though because it was the first time the pain had gone away and come back soon afterwards so I decided I should speak to someone.

It was a slow wait in A&E as my pain level was now obviously manageable. I felt dismissed and like I was taking up space, despite it clearly not being normal to be in so much pain I could barely walk, for hours, twice in a week. Eventually I ended up at what I think was the out of hours doctors area (it was the weekend). The urine test showed no infection and a kind and sympathetic lady poked me a few times. We discovered that when she put pressure on my left ovary it was tender and she said it was probably another peri-menopause symptom. Apparently ovaries shrink during peri-menopause which can cause pain. She prescribed me painkillers and recommended I called up to see if I could get a cancellation date for the ultrasound scan I had a referral for, to try and get seen sooner.

Having a Private Gynaecological Ultrasound Scan (29th November)

On the Monday after my A&E visit I called up the outpatients waiting list and they said my ultrasound referral (which they had only received a week or two before) was non-priority. Waiting times were around 12 weeks from referral so they wouldn’t even entertain looking at cancellations. They suggested I speak to my GP to ask for the referral to be made “Urgent” which only had a 4 week wait. My next phone call wasn't to my GP, but a local clinic that offered private gynaecological scans. For £150 I could have an appointment for that Saturday, so I booked that.

The clinic is run by a local Gynaecology Consultant who works for the NHS, but also has a private practice. I had previously visited for early ultrasounds in my pregnancies so I knew and trusted her. The ultrasound to look at my womb, ovaries and other inside lady bits needed to be an intrauterine scan, also known as transvaginal ultrasound. This means you get a probe thing partly inserted to do the ultrasound, rather than the scan being through your tummy like you have during pregnancy.

The private consultant talked me through each step of the process. She had the screen positioned so we could both see it and talked me through what she could see. My womb looked healthy and my right ovary looked ok (but had one, maybe two follicles which supported a diagnosis of peri-menopause). When checking my left ovary, she found a 10cm bi-septate (two chambered) cyst. So that was why I was having the pain. Looking back it was probably causing pain due to both the size causing pressure and from occasional partial torsion where it twisted slightly before later untwisting.

Her recommendation was that I was urgently referred to the hospital for removal of the cyst and left ovary. Due to the size and way it had grown, it was unlikely that the cyst could be removed leaving the ovary functional. There was no blood supply to the cyst, which suggests it was non-cancerous, but there were some things in the cyst she couldn’t identify and also due to the size she felt the removal should be a priority. She suggested I had a blood test which can indicate if cancer is present. She wrote a letter for my GP and provided me with all the images.

I knew it wasn’t good obviously, but it wasn’t until I was later telling my partner that I really thought about how big the cyst was. 10cm is about the size of a grapefruit. It still surprises me that I no point could I feel the lump or see any sign of it from the outside. I also didn’t realise, until talking it through later, that surgery could be expected to have a 6 week recovery time.

Trying To Get An NHS Referral To Remove The Cyst

Off I went back to my GP on Monday, armed with knowledge of why I was experiencing pain, and a recommendation of what needed to be done by a qualified, experienced and specialist medical professional. The GP made a referral, attaching the private letter and images. He also sent me for the blood test she recommended.

I managed to get a blood test the same day (which given our local booking system is an achievement). The next day I saw on the NHS App that my referral for urgent removal and investigation had been rejected because they didn’t think it was cancer and so shouldn’t be on the 2 week wait pathway. 

I booked an appointment the following day (Wednesday) and spoke to yet another doctor asking for help and also sharing my general despair. I was in pain, anxious about the cyst which I had been made to feel could explode at any point with catastrophic consequences and on top of this I was struggling with all the peri-menopause symptoms and periods every few weeks.

This GP suggested sending an “advice and guidance” request to Gynae to ask how we could get the cyst removed as a priority, considering the standard average waiting list time for first appointment for Gynae referrals was 24 weeks. This was frustrating, but the positive thing was in my explosion of emotions he said he didn’t see any reason I couldn’t start on HRT and to book another appointment with him to get that sorted (I did and we did, yay, he’s now my favourite doctor).

The NHS Ultrasound Scan

On Monday 8th December I was contacted by the hospital to have an ultrasound which I booked in on the Wednesday. Obviously I had already had a private ultrasound a week and a half before, but if this was what the process needed I thought it was best to go with it. The ultrasound was from the referral made because of peri-menopause symptoms. It had been on the waiting list for 4 weeks and changed to urgent.

I could write a whole separate blog post about this appointment including how some of what I said was dismissed, the write up stated things happened that didn’t and also how (as is I believe standard in an NHS scan) the screen was positioned so I couldn’t see it and he didn’t talk me through what he could see. He did confirm the information I had already told him though, agreeing there was a large cyst (they measured it slightly smaller at 9.8cm). Obviously they couldn’t trust the private scan conducted by a more experienced medical person could they? The sonographer said the information would be passed to Gynae.

Confusion About Referrals

I received a call on the Friday from my GP surgery to say I needed to have an appointment to discuss the scan results. I said I didn’t need one as I knew what it had found, I could also read the report myself on the NHS app. I told them the sonographer had said it would be passed to Gynae. The receptionist said that wouldn’t happen and in order for me to be referred for removal I needed to have an appointment with my GP to discuss the results. Only then would the GP make a referral. I relented and asked when I could have an appointment. The first available appointment was in 2 weeks time! They insisted I had to have the appointment whether I wanted one it or not. Given everyone was telling me it was urgent to get it removed, and I thought I was already on a waiting list to get it removed I was not happy. I got upset and angry.

By this point the cyst was heavily impacting my daily activities. I couldn’t walk far or stand for long without feeling like my sides were falling out, I also had to wee regularly (by January it was up to 5 times during the night). I was in constant fear that there would be an emergency and I wouldn’t be able to get to hospital or have anyone to look after my children. In addition to the constant discomfort, every so often the pain would increase for a while making it difficult to walk or do anything. 

Having learned a lesson from waiting for feedback on the blood results in the summer I knew that I could call my GP surgery first thing and get a same day appointment (not that the receptionist mentioned this when I said it was urgent to get a referral). So on the Monday morning (after a stressful weekend worrying that I still wasn't on a waiting list for removal) I spoke to yet another doctor. Despite what the receptionist told me, the doctor said she could see an urgent referral on their system for me already. She also gave me a number I could call to make sure it was on the hospitals system.

I called the hospital and they said the referral was there and not to worry, I would be contacted when I reached the top of the list. I was fine with this. I never assumed my need was greater than others, I just wanted to make sure I had an urgent referral and would be seen at some point. I knew because of Christmas the wait might be longer than normal as well so I set about waiting patiently.

At the beginning of February I called the hospital again as 7 weeks had passed and I hadn’t heard anything. I thought that was long enough that it wouldn’t look like I was being difficult following up again. I was in a lot of pain and rather fed up. The hospital booking team person I spoke to this time said they did not have a referral for me and that it had been removed at the request of my GP surgery. I was devastated.

I called the GP surgery, but they were having problems with their phones and after briefly speaking to someone about the problem the call would drop out. After repeating this process three times I emailed them asking for help. They denied that they had asked for the referral to be removed but said a new referral would be made and the doctor would ask for it to be prioritised.

A week later (13th February) I called the GP surgery again and asked for some strong painkillers as over the counter ones were no longer helping and I was in pain most days.

I received a call that week from the hospital inviting me in to a Gynaecology appointment that weekend. I met with a gynaecologist who was lovely. She could see I was struggling and that the cyst was having a significant impact on my ability to function normally. She said I would be moved onto the waiting list for surgery and she would try and make it as high as priority as possible. She said that she didn’t know how long the wait would be. If it got worse she advised it might be worth going to A&E again as that wouldn’t hurt the prioritisation either.

My Second A&E Visit

On the following Friday (27th February) I was shuffling into the school gate to drop my children off. I was clutching my abdomen in pain and wincing. My friend persuaded me to let her drive me to A&E. I wasn’t going to achieve much that day due to the pain so I agreed.

It was a long, boring and uncomfortable day at the hospital. I had various blood tests while I was there and they gave me some fluids because I was dehydrated (from waiting around in the hospital for hours). I was eventually moved to the Gynae outpatients to sit there for a couple of hours before seeing a doctor.

He poked me for a bit and recommended I took paracetamol and ibuprofen. The blood test showed that my infection markers weren’t particularly high so he didn’t think the deterioration was anything to worry about. I had stopped taking the cocodamol I had been prescribed by my GP because it caused stomach cramps and was probably making me constipated. That and a huge cyst compressing everything in that area. I had been unable to empty my bowels for several days at that point. 

I thanked him politely, limped off and went home. I felt my day had been wasted, but I was glad he had confirmed that I was a high priority on the waiting list for surgery.

Waiting for surgery to remove my ovarian cyst

Third A&E Visit - Ovarian Torsion

In the early hours of the next morning the pain got even worse. I took the paracetamol and ibuprofen like I had been advised, but I was quickly sick. And then sick again and again. I was in agony and kept being sick. At this point the pain was as bad as it had ever been and it was getting worse. My partner arranged for my teenager to look after her siblings until my in-laws could get there and he took me to A&E.

We got to the hospital about 8.30am and by this time I could barely walk and I couldn’t complete a sentence. I would compare it to very end stage labour pain, the point went the baby is crowning and your body can only focus on pushing the baby out. Except those end stage contractions have brief breaks and don't last endlessly. You know there is an end point and you are supported through it by a midwife telling you how brilliantly you are doing. You aren't expected to stand in a queue before giving a receptionist your personal details. Luckily I still had my hospital ID band from the day before so I just about managed to hand that over before slowly making my way to the seating area.

My partner left to park the car and within a few minutes of my arrival the same nurse who had taken my bloods in A&E the day before called my name. She could see how bad I was and brought a wheelchair over because I couldn’t walk to the bay. I was shaking uncontrollably and groaning in pain.

After the blood test I was taken straight into the main section of A&E and given a bed. This was the first time I was considered unwell enough in my three visits to have a bed. I was still being sick and I remember lying on the bed groaning while every staff member that passed my bay looked in, concerned why someone was making so much noise. I was given some morphine by mouth which made a small difference, but then I was sick again.

I continued to make what must have been a distracting amount of noise so not long after they agreed to give me morphine by injection. For the first time in several hours I was able to lie still and be quiet. I was still in pain, just not total agony.

After a little while, the same gynaecologist that I had seen the day before came down to A&E. We recognised each other and it was really helpful that he already knew all the history from the day before and he could see that I had got significantly worse over night. So the day before hadn't been wasted after all.

There was space on a ward so he agreed I could be transferred straight away to wait for surgery. He didn’t know how long I would need to wait as the operating theatre is shared between Obstetrics and Gynae. The advantage being that it was the weekend so they didn’t have a full list booked in. Despite my pain level I didn’t have any problem holding out if someone needed an emergency c-section. As long as the morphine kept coming.

Ovarian Cyst Removal Surgery At Last

Luckily an hour or so later the gynaecologist was back with a consultant and an anaesthetist to prepare me for surgery. We agreed that they would go in via open surgery and they would remove the left ovary and cyst. He would check the right ovary, but I asked for that to be left unless there was a medical reason to remove it. This decision was made easier for everyone because I have 3 children, I do not want any more and I'm peri-menopausal so my ovaries are less important than for many women. 

When you have an ovarian cyst removed you can have it done by keyhole surgery or open surgery ie they make a few small holes or one big one. Knowing how big the cyst was 3 months earlier (and before it was causing so many problems) I knew the only way they would be able to remove it via keyhole would be to remove it in pieces and I didn't like that idea. Given it was likely they would have to switch mid-surgery to open surgery I was happy to go straight for open surgery. While the recovery for open is more significant I felt it would be the simplest and fastest way to see what was happening and remove anything that needed to come out. The surgeon was happy as it’s a much easier operation. If you are wondering, the technical name for what I had (based on my discharge papers) was “Open left salpingo-oophretomy and ovarian cystectomy for ovarian torsion”.

I went into surgery about midday and it was a short surgery so I wasn’t under general anaesthetic for long. I don’t remember specifics, but I was in the ward still when I got off the phone to my mum at 11.45am and I took a sick bed selfie of myself back on the ward at 2.30pm (only 6 hours after we arrived at the hospital).

I remember being wheeled to the operating theatre and every bump causing me pain. Then in the operating room I think they gave me an epidural in my back, I remember them asking me to sit on the edge of the bed (with their help) and them spraying something on my back which they warned me would feel cold. When they sprayed it, I flinched and cried out in pain due to the sudden movement. They were all very nice though.

I was then helped to lie back down and given general anaesthetic though a mask.  The next thing I remember is waking up in recovery.

Recovering In Hospital

It's all fuzzy, but soon after coming round I must have been taken back to the ward. Initially I wasn't in much pain as I was still numb and couldn't feel anything below my waist. I had a catheter partly because I couldn’t walk following the epidural and so they could monitor urine output. This was excellent news because as the pain relief wore off and I started to be able to feel pain again it huuuuurrrrrrrttttt. 

I only spent one night in hospital which was a relief as it was a pretty horrible experience. The sudden drop off in hormones gave me a migraine (down one ovary and minus the HRT patch they took off before surgery). I also felt sick and had no appetite. This was probably a good thing because the food available to me was very limited. I am dairy free and because it was an emergency admission they hadn’t planned any food for me. They wouldn’t give me anything stronger than paracetamol for the pain, but at least they were persuaded to give me by IV due to the sickness. The anti-sickness medication came in tablet form, which was unhelpful as I couldn’t keep the medicine down. 

I was in a ward with 4 beds. The two ladies opposite me were in for gall bladder problems and were waiting for surgery, while having to eat very plain food. It was expected they might need to wait several days for a surgery slot (the General Medicine operating theatre was more backed up that the Gynae/ Obs one I had gone in). They were both lovely and we chatted briefly and were able to support each other. The lady in the bed next to me was a different story.

It is impossible to know what this lady was like normally, but she was an older woman who was delirious. She spent a lot of time talking to people she thought were there and weren’t. She was meant to stay in bed but kept trying to walk off. She was also determined to vape. She got told she wasn’t allowed to and several times she pulled the curtains closed before having a vape, but in one of her less lucid moments she did it in front of a nurse. The nurse then took all her vapes and locked them away. The lady responded by calling someone and asking them to bring her a whole load of new vapes. Which were also eventually taken away.

During the night she was constantly getting up, talking to imaginary people and searching for her vapes. She even came into my bay, trying to go through my things to look for them. It didn’t make it very easy to sleep.

The nurses asked a healthcare assistant to sit with her, but the elderly lady continued to get up and talk. It wasn’t until about 5am the lady finally slept, meaning the rest of us could too.

When I was told the next morning I could go home that day I couldn't get out of there fast enough. I was desperate to go home, sleep and have migraine medicine. First though I had to attempt to get out of bed and prove I could wee on my own. 

They took the catheter out and forced me (in the way well meaning, but firm nurses do, not in a physically manhandling way) to sit in a chair rather than recline on the bed. Reclining was much more comfortable plus the beds have those controls which meant I could change positions without using my muscles. Due to the incision wound and the internal parts of the surgery, moving was very painful, but nowhere near as painful as the ovarian torsion had been.

Anyway at some point late morning I hobbled to the bathroom and managed a big wee. They then prepared my discharge notes and the medicine I needed to take home. I was sent home with blood thinner injections I had to give myself and antibiotics for a week.

My husband had come to collect me and we walked very very slowly out of the hospital as my husband didn’t know where to get a wheelchair from.  All the staff on the ward were busy with patients and I wanted out of there to get home and rest. Even if I had to hobble at snails pace. 

Recovering At Home

I have so much respect for people who have c-sections as the incision is in a very similar place to the open surgery cyst removal incision. I had to Google how to get out of bed at one point because I needed the toilet and I couldn’t work out how to get up without using my stomach muscles. I also got stuck half in, half out of bed a few times over the next few days, unable to move my legs (I had to call for someone to come and help me). How do women manage to look after a baby while recovering from surgery?

The first week I was mostly lying down in bed, getting up to go to the toilet and briefly sitting up in bed to drink. I wasn’t really interested in food for a week or more so I didn’t eat much.  I couldn’t move from lying flat to sitting in bed without a lot of pain. Mostly I had to get up to standing and then sit because shuffling back was too much.

I was very lucky that my in-laws were able to stay for a couple of weeks to look after my children. I briefly made it downstairs 6 days after surgery, but it hurt to be upright for long (either sitting or standing). My attention span was awful and I couldn’t even focus on light reading during the first week.

Initially the whole area hurt, but after a week or so it felt like the incision was hurting more than the inside bit. The wound started to come apart on one side a couple of weeks after surgery and it started to get red and angry so I got more antibiotics. First trip out post surgery was about 10 days after surgery, and it was to the GP.

18 days after surgery I went out again, to a prebooked hair appointment. I was driven there and back so didn’t have to walk far, and I took it very slow, but it was much more manageable moving around. A couple of days after that I managed to go to an Easter event we had been invited to. This was a huge improvement, but at 3 weeks post surgery I couldn't walk far and I had to keep sitting down for a rest. 

4 weeks after surgery I was starting to be a bit more normal. I had an invitation to an Easter panto and a friend drove me there. Luckily it wasn’t one of their funniest pantos with endless belly laughs or I would have struggled.

I had a meeting around this time I needed to attend (via Teams) and I couldn’t follow what people were saying properly as I still had so little attention. I was also struggling to sit upright and had to turn the video off and take my laptop into the bed with me to be comfortable. I don’t remember most of what was discussed in that meeting.

5 weeks after surgery I finally had the concentration to work for short periods. I was still uncomfortable and could only sit on certain chairs without pain. I slowly increased my fitness from this point though and was able to walk for increasing lengths of time.

6 weeks after surgery my incision was finally “sealed” with no gaps or scabs. There was still pain and discomfort, but I was no longer worried about infection or bleeding.

How Much Recovery Time Is Needed After Open Surgery?

So for me, I felt able to physically manage my normal activities without support about 7 weeks after surgery. This was a gradual build up from 4 weeks, which was the point I felt I could safely look after my children on my own and drive short distances. 

I’m sure my recovery was delayed slightly due to the wound getting infected. If your wound healed better you could become active earlier. Regardless of how fast it heals I think people should ensure they can spend at least 3 weeks resting, not having to carry anything heavy and not having to walk around or stand too much. I can't see how anyone could do anything other than mostly bed rest for the first week without risking lots of pain and the incision coming apart.

Mentally the general anaesthetic (and maybe hormones) really did a number on my brain. My surgery was short, but even so it took me weeks to get enough concentration back to focus on scrolling social media, let alone reading or watching films. I could start working for short periods around 5 weeks post surgery, so if planning time off work, it’s not just the physical recovery you need time for, but the mental recovery too.

Peri-menopause Symptoms

Mixed in with the recovery from surgery and general anaesthetic was also the impact of a drop in hormones. I was on HRT patches before surgery and had whatever hormones my left ovary was managing to produce totally taken away when it was removed so my many peri-menopause symptoms came back big time. I replaced my HRT patch 24 hours after surgery (as soon as my husband brought one to me in hospital), but it wasn't enough. 

It’s hard to separate out what caused what between the trauma my body experienced, the general anesthetic and lack of hormones, but it wasn’t fun. My in-laws were amazing and basically gave up their lives for us for 3 weeks, yet the number of times I wanted to yell at them because I was full of rage was horrible. I had brain fog, night sweats and more. After a few weeks I spoke to the doctor who increased my HRT dose and after a few weeks this helped me feel more normal. My motivation to do things didn’t return until June or July (4 months after surgery).

My Scar and Long Term Recovery From My Ovarian Cyst Removal

It is currently 7 months post surgery. Until about a month ago I had some numbness on the left side where the cyst and ovary was removed. The numbness has now gone, but I get some mild pain in the area at times.  There are also days where the incision site gets really itchy, which I guess is the scar tissue. Overall though it doesn't really impact me. I'm hopeful that it will all just gradually continue to recover until all that is left is the scar.

While some people with open surgery (and c-sections) will have really neat scars that become near invisible, mine is far more visible on one side where the wound came apart. There is about an inch in the middle that is hard to see, and the right side where it got infected is a little more red/ purple, but on the left it is about 1cm wide.  Overall the scar is about 12cm long. It started off straight, but over the days following surgery it ended up with the left side lower. This shows that even though I didn't realise the area was swollen at the time, it must have been. I would share a photo, but it's on my bikini line and I would need to get a wax to prevent it getting this post flagged as inappropriate (and I don't like the idea of waxing it yet). 

Over the last month I have noticed that my hair has got significantly thinner (just to clarify I mean the hair on my head, given we have just jumped from talking about one region to another). Whenever I wash and dry my hair there is a more than normal amount of hair that comes out. Apparently this is fairly common about 4 months after trauma and it can take 3 or 4 months to start growing again. I’m hoping this is the case and it isn’t a hormone or life related thing where I will have a super visible scalp for ever more.

Follow Up Care

I don't know if it would have been a different story if my surgery was planned, rather than emergency, but I had no follow up care from the NHS. My discharge notes said that if I had problems I should go to A&E. I didn't receive advice on recovery times or how to look after myself. Or at least if I was, it was given to me in that haze of exhaustion before I left hospital and not anywhere in writing.

I still have my sharps box with the needles from the blood thinning injections and there doesn't seem to be a process to arrange for them to be collected in my situation. Some pharmacies will accept them, but it can be inconsistent. 

My discharge notes say that I will be sent the Histology results from when they check the cyst to ensure there is nothing worrying in it. At 7 months post surgery I haven't had this yet. I thought it must have been lost and emailed PALs at the hospital (The Princess Alexandra Hospital Trust) I was admitted to a couple of weeks ago asking if they could look into it.  I received a phone call last week from someone who said they could see the results on the system, but it needed a doctor to review them and write a letter. They did say that no news is generally good news (so I will read between the lines that it all looked ok, but they aren't technically qualified to formally advise me of that).

Reflection On The Care I Received

One of the big things that I feel was missed, right from when I first realised the pain indicated a problem, until, well now I guess, is a lack of information and advice. The most useful information came at my private scan, but the impression she gave was that it should be removed in a couple of weeks so I didn't think about how I should be managing it long term. If she, and I, had realised it would have been 3 months before it was removed, I think she would have given me more advice.

I know many people wait longer than 3 months for removal, but that is generally when the cysts are smaller than mine was and when they are causing less of a problem. Many people live with ovarian cysts, not knowing they are there and without them causing any pain. For patients who want to maintain their fertility and have a baby in the future they may avoid surgery if the cyst is thought unlikely to cause problems.

The small amount of information I received about living with the cyst suggested I should be careful to avoid it bursting. This is quite a scary and vague bit of information.  I was told if it gets really bad to go to A&E, but I having been essentially dismissed from A&E the first time I went I didn't know how bad was bad enough to go.  I was advised to avoid knocks and vigorous exercise, although soon after it was identified I would get pain even after walking so exercise was easy to avoid. The knocks were less easy as I have a physical and strong 7 year old son who can nearly knock me over with his hugs. I had the impression of it being like a water balloon, but they are far more stable than that. Then again JoJo Siwa apparently had an ovarian cyst burst around the time I had problems and her pain happened while she dancing so maybe taking it easy is a safer bet?

Torsion was the bigger problem for me. I was told by one of the many GPs I saw, that because it was so big it was unlikely to twist as it didn't have the room. Turns out when they removed it, it was full torsion and purple, so yes it definitely twisted. It’s also likely that all those other times I had intense pain for hours and hours were also due to it twisting before untwisting. The pattern of when I experienced some of the worst of the pain suggests that the torsion wasn't caused by anything I did. The 3 most painful times started when I was in bed asleep so resting didn't stop it happening. 

No one was able to give me any timescales at any point on how long I would have to wait. I know it's hard to estimate, but it would have been useful to know it would be months so I could manage my expectations better, and I could also have avoided the delay from when my referral went missing. 

I found it really hard having the worry hanging over my head. I knew if there was a sudden problem I wouldn't be able to look after my children or drive myself to hospital because of the pain so I needed emergency back up. I was also worried that if it happened during the school day it would distress my children if I suddenly wasn't there at pick up. The school were great and helped me plan for what I could do in that scenario.

It was also hard on my family who needed to be on high alert too. My in laws were best placed to come and help us with childcare, but they had a holiday booked for February and they didn't know whether they should go or not (in the end they went and the surgery was just after they returned).

I don't know how it would have been possible to avoid the worry and stress, but I hope that if you are reading this after been diagnosed with an ovarian cyst that sharing my personal experience helps you feel more informed. Hopefully many of the delays will be unique to my situation, but I'm sure providing the full story will be helpful to some. 

Oh and a final note, that might help someone out there. When I was recovering and decided I wanted to book a holiday to cheer myself up I knew I had to let my annual travel insurance know about the surgery. My insurance had auto-renewed on 24th November, which was the day after my first A&E visit. They told me that even though I didn't know what the problem was at that point, having a problem which predated my current policy could have invalidated any claim I made (even for totally unrelated issues). So if you have annual travel insurance (or any other insurance covering your health) make sure you make them aware as soon as possible, especially if you have any existing holidays booked or you plan to book any new ones.