Sorry if this is the wrong place to be posting considering I have yet to be diagnosed but after reading though some other posts it seemed like a very supportive place to do so with others who have been in my position (and apologies for the super long post I am famous for writing borderline essays it seems)
Background - I'm 32 and have been on at my doctor for over a year for some form of investigation into my symptoms. I was diagnosed with PCOS as a teenager and as a result have never really had a proper period. When I was diagnosed at 17 my advice from a male doctor close to retirement age was "Just enjoy not having periods and come back when you want to have a baby" Luckily as the years went on and I done research and switched doctors and found myself a female ran surgery who took my concerns seriously. I was experiencing heavy bleeding after sex last year to which my doctor suggested an urgent referral due to this and my PCOS and absent periods. Unfortunately she called me to say the hospital rejected this referral as urgent and was advised to simply monitor it.
By the middle of this year I told my doctor I had a gut feeling something just wasn't right and she voiced she was just as annoyed as me the referral had been rejected so she referred me for an urgent ultrasound scan which only got accepted as routine. Months past and I phoned the hospital to be told I was still a fair wait away unless I could take a cancellation the following day which I happily took.
It was at this point my lining was measuring 16mm and when my urgent referral was finally accepted.
I have my biopsy on the 1st of December and am absolutely full of fear. The entire hormone imbalance situation has made my life fairly miserable but with this upcoming biopsy things have just escalated. My moods are horrific and feel like I'm barely holding it together. I work 2 jobs putting on a brave face and just cry the second I get home. I think so logically and with brilliant intentions but what one part of my brain is thinking theres another part that just makes me feel and act the total opposite. I've always just accepted and put up with the acne, the migraines and mood issues that I put to down to my PCOS. I had a full blown break down the other day in the toilets at my new work when I weighed myself on their scales as I've been eating well, training regularly with a personal trainer for a year and a half and feel I physically look better only to discover I'm half a stone heavier than when I last weighed myself and just worked myself up over how doctors go by BMI not the fact you're old jeans that were too tight are now too big.
I also made the hardest decision of my life to walk away from the most amazing partner I've ever had who I lived with due to them being uncertain if they wanted any more kids which I fully respected. His kids are all adults now but I've always had such a strong need to be a mother and currently don't have any children that I didn't have it in me to let that dream slide. To the point I've never cared about careers like my friends - as long as I was working a job I enjoyed and made enough to cover bills I never cared about work I just always wanted the end goal of being a mum. I can't help but feeling this overwhelming fear that I've made the biggest mistake of my life doing this only to be told weeks after that I don't ovulate, have over 200 cysts on my overies and now need a biopsy to investigate further. But there is also this side of me that's so sick of my overies and womb always being the source of my misery that if my biopsy came back with results that potentially required a hysterectomy I think I would take it over the chance of being a mother naturally. And the advice I would give my friends would be if you can't have kids naturally there's still things to consider like adopting or fostering so I shouldn't be feeling guilty I walked away from something amazing because of one potential bump in the road on my journey to motherhood. I know myself this relationship will take me years to get over and I'll need to be alone to heal that I would never have a child with someone I wasn't truely in love with so the combination of wanting a few years to myself, these issues and time not particularly being on my side it's something that's just sending my mind into overdrive (before I've even had the biopsy!)
So I guess my questions are as follows;
What can I expect from the biopsy?
There was no mention of wether I can attend the biopsy alone and drive home after? I would of always relied on my ex partner for things like this and don't want to bother my family. We are also still on good terms and know he potentially would still take me but I don't know if that would just set me back on getting over him.
Did you have a long wait for results?
Any tips on how to settle your nerves or think rationally while you await results?
And are they able to tell you if you have cancerous cells from the biopsy itself or is this something that's confirmed fully after a hysterectomy? I'm having trouble getting my head around the process at this stage.
If you made it this far thank you so much for listening to me.
Hi Daisy32 .
It sounds like you have a lot to think about and options to consider. I hope we can help you catch your breathe.
Can I check, are your biopsies being done via hysteroscopy? If so, my hospital advises it is best to have someone to drive you home but it is not mandatory. The procedure itself is short and mine took about 10-15mins. I allowed about an hour overall for the 15min pre-procedure paperwork and gown change, then post procedure visual finding review with consultant. The biopsies are sent off and you have to wait for histology results.
If you are on a cancer fast track, the aim is to confirm or rule out cancer as swiftly as possible. The term 2 week waitlist or 2WW is often used and it means each step of the process should ideally not take more than 2 weeks. Thus you get a biopsy done within 2 weeks, histology results within the following 2 weeks, etc.
My hospital however often misses these targets and I have had stages taking over 5 weeks. If a target timescale is not met, you can always chase your hospital to ensure you're still on their action list.
The biopsy results are known has histology or pathology reports. This will detail what type of cells they have identified and whether there are, or have a risk of being, cancerous.
Depending on what is found and your life choices, there can be other options other than hysterectomy.
Hello Daisy32
Welcome to the Online Community. You are very welcome to post here as much as you want. It does not matter about not having a diagnosis - you are worrying about cancer - so this is the place to be.
You seem to have such a lot going on at the moment- that it must be overwhelming at times. I will try and break things down a bit and see if that helps.
-The PCOS, absent periods and bleeding after sex are all good reasons to get checked out. I am sorry that your original doctor was not more supportive or proactive. It must have been very frustrating that the hospital originally rejected it being urgent.
- well done for returning to the doctor when you felt something was wrong and persisting to get the cancellation appointment.
-the ultrasound showed a 16mm lining which led to it being seen as urgent. There are potentially different reasons for hyperplasia (thickened lining) I will pop a link below.
Endometrial Hyperplasia: Causes, Symptoms and Treatment | Patient
- Hyperplasia would be something that would be investigated as urgent because they would want to exclude any potentially more serious reasons for this. Hyperplasia does not definitely mean cancer will be diagnosed but that they need to take a closer look and test the cells.
- It is perfectly normal to feel scared about the biopsy. I certainly was but it was manageable and it was better to know what I was dealing with than worrying about what might be going on. I will put a link with some info. I was phoned by the nurse the day before and she explained what was going to happen in detail and I had the opportunity to ask questions. She advised me to take some paracetamol an hour before the procedure, which I did. I was well supported during the procedure and I found it painful for about 5 seconds when the instrument went through my cervix. Other than that it was a bit like mild period cramps. Everyone is different though, but you can ask them to stop if needed.
Biopsy for womb cancer | Macmillan Cancer Support
-The PCOS sounds really unpleasant and combined with worrying about the hyperplasia and biopsy it must be hard. It sounds like you are really busy with your 2 jobs. Have you got anyone at work that you can confide in? I was taken ill at work so my manager and other staff all knew something was up and were very supportive. It does help if there is someone you can go to if you just need 5 minutes out. With the stress of all of this plus your PCOS symptoms- would taking some time off help? Just until the biopsy is done? Maybe your GP would issue a Fit Note?
-well done for all your physical training and healthy eating. I get it that it must have been disappointing to get on the scales and see a small weight gain- but is it possible that is due to increased muscle due to fitness? Might explain why your jeans are now looser. Yes, doctors do use BMI, but they will know that it isn't always 100% accurate- just thinking about some athletes- like rugby players etc- who are really fit yet would show as over weight.
- I understand how hard it must have been to separate from your partner and this will take time to deal with on top of everything else. Perhaps another reason to speak to your GP about a short time off work. I wonder whether some counselling might help to talk through your feelings about being a Mum if it does turn out that a hysterectomy is recommended in the future. I was lucky in that I had already become a Mum when I was diagnosed and can appreciate that it is another factor. If you did get diagnosed, fertility is one of the things they will talk to you about and there are potentially some treatments that are suitable for some women with early stage womb cancer. Some women can be offered hormonal treatments and regular monitoring to keep the cancer from growing while they have a child.
So your questions;
The biopsy- it can be done as an out patient or with a general anaesthetic. I have posted a link above. Mine was done as an outpatient. It was a bit uncomfortable but doable. It helps to take some night time/heavy flow pads with you as you are likely to bleed afterwards. I did for about 24 hours then it stopped. You can be in the room on your own for the biopsy but I would advise that you don't drive yourself. I felt really anxious before mine and afterwards a bit shocked/light headed. Have you a friend you could confide in who could go with you? Or would a taxi be an option? Some hospitals also have hospital transport that can be offered to some people (red cross drivers). I wonder that if you did drive your self whether they would want you to wait for a while before they let you go. I would think driving yourself would not be the best idea as you just don't know how you will feel afterwards.
The results- I got mine around a week later. I opted to have a phone call from the nurse. I did have the option of going in for an appointment but preferred to have the phone call. Some people seem to wait longer and a lot can vary between hospitals and areas.
Waiting for results- it was hard to wait and your mind can go all over the place. I found confiding in others, keeping busy when I could. Sometimes I wanted to talk about it but other times I just wanted to forget about it and do things like watch rubbish TV. It's a case of going with the flow and accept a few wobbles but that the process is necessary to find out what is going on and once you know that- you can find out what you need to do to sort the problem.
Biopsy- the biopsy will be able to tell them if there is cancer in the endometrium. It will also give them an idea of a few other bits and pieces. If they do find some cancerous cells then the next step would likely be to call you in and offer a CT scan. If they do not find cancerous cells then it could be that they monitor you and repeat the ultrasound in a couple of months to see if there is any change or you might be referred to see what else could be causing your symptoms. IF you did get a diagnosis from the biopsy and IF they recommend a hysterectomy then after that surgery they would have post op pathology results (mine took 3 1/2 weeks) and that is where they look in more detail to get a sort of complete picture. Mine showed the type, stage, grade and some more genetic markers. These are used to decide on further treatment etc.
I hope this helps a bit but if you feel like talking things through would help then please consider giving the Support Line a call. The number is at the bottom of this and they are lovely on there.
If there is anything else that would help, then please do ask. I hope that your biopsy goes ok and that things can start getting sorted for you. It must be very overwhelming to have all of this to deal with. Deep breath and try and take it one step at a time. Hopefully this time next month you will have a far better idea of what is causing your symptoms and what can be done to help.
Take care
Jane
