To think women (well all people) should be able to access what they need

[XEbonyrose1X]

We are all told.

Attend your smears
Report any new lumps
Report bleeding that's unusual.
Any pelvic pain etc tell your GP.

I've posted recently because I've had a horrible pain in my left ovary area that's been niggling on and off for a few years. But lately it's hurting more and it's quite uncomfortable.

The last two weeks I've had sharp stabbing pains in that area and dull cramps. I've had Bleeds.
I stretched ten days ago and a pain shot through that area and caused a bleed.

I told my gp the next day that I was concerned for these symptoms. He said I had to have an up to date smear and swabs before I can be referred. I had them done yesterday only to be told it would be 8-12 weeks for results.

Last night I laid on my stomach in bed to reach my phone and the pains got really sharp. Not agony. Keeping still helped control it but walking made it stab. I was a little uncomfortable probably 5/10. It did worry me.

This morning. It's crampy and sore all on the left side. (Ovary, left side of groin, hip area. Occasional stabbing pains.

The thing is the GPS have got sick of me. They have tried hormones and stuff for anemia but my issues remain. I asked them to refer me as I didn't feel I was getting anywhere and they argued they've suggested the coil three times. But I want to know what's going on first. I really want a gynocology referral. Also my drs have not seen me face to face since covid. They will not see you! It's all phone or email.

I feel I need a scan. I'm scared something is going to rupture or twist.

I guess my smear could have irritated it, But it didn't hurt and this discomfort is higher inside.

I also don't drive and there's only a basic treatment center locally. There is a hospital here and I've had a scan here in the past but they often send you an hour away, which I'd struggle with as I have children. Although I'd find a way but I don't think the gp will.

I just feel there's so much waiting around and when the problem is actually happening you can't access the help you need.

For the last year I've been barely living due to all this. The GPS are starting to focus on me being anxious and keep pushing me to get therapy.

Also you can't currently have bloods taken due to the labs not accepting the ones I need right now.

I just don't know what to do. I'm so worried I'll be in agony and need rushing in.

I'm currently bleeding again too.

I really feel that cancers and other gynocology problems should not be held back due to covid.

I feel we should have rights to refer ourselves for scans if our GPS don't realise what we are going through.

Im surprised too.

I think it was because I said I feel I've explored all the options they can offer me. I wrote a letter and said

For the last year I've been contacting you most months with the ongoing issue of heavy periods and anemia.

I've tried x y and z and I've had one ultrasound scan 8 months ago.

Therefore I now feel i need refering over to gynocology to look into further options and to look closer into what could be causing me issues. Is there a possibility of endometriosis etc?

The Dr replied and said actually there are still things we can do. Dr bloggs has written on your notes that she has suggested the coil. I strongly recommend reading the leaflet we have sent you and I will resend the link to you too. You need to book a smear and have swabs as you would need these things to be up to date before any referrals regardless.

So it wasn't a never refer but I am having problems this week that really need investigating now in my view. Having to wait two months before I can request more seems ridiculous. Especially as I could end up worse due to slow progression.

I know people are so much worse off than me. But I deserve to be energetic and we'll at 30. I'm hardly old and my life has been put on hold due to this.

We are due to go to Dorset in April for a holiday and I've actually said to my partner if I'm no further ahead you might have to take the kids and invite your parents and I'll stay home. Which really speaks volumes on how it is affecting me. I have about ,10 good days in every cycle and the rest I'm either bleeding. Having ovulation pains. Weak. Having headaches or feeling queasy from hormones.

I got a referral through my osteopath.

I don’t know why you would need an up to date smear test for this. How strange. It sounds like it might be polyps or fibroids and your GP could refer you for a scan. I’ve had similar and I had cysts, was referred to gynae for a laparoscopy where they diagnosed endometriosis and removed cysts too. Keep pushing them!

I came to say what blistory has already said - cervical smears are a screening tool, NOT a diagnostic test. It is completely unacceptable that they're refusing to investigate until you have an up to date smear. Also, in case your GP has forgotten, screening is offered to all women who meet the criteria, it is not compulsory and a pre-requisite for accessing other NHS services.

I honestly think they don't believe me. It's shocking. The little errors they've made in the last 15 months.

I went in August 2019 weak and just not feeling right. I explained my heart was racing and my lungs felt like couldn't fill up. I was going lightheaded when out and about. They gave me a CBT card.

I went back two weeks later and said I think it could be my periods and things as xyz. So she took bloods at that point but didn't seem to concerned. She gave me a combi pill and sent me on my way. I was asked to go see her the following week.

I sat down and she said what can I do for you. I said you asked me to come in. She shook her head at her screen for a few minutes and asked me what it could be. Then she said oh your anemic and you have reserves. No wonder you feel unwell.

In march she was on holiday so when I went back after once again becoming exhausted and not being able to get of the sofa I saw a male locum who was newly qualified. He gave me the mini pill.i told him all other drs said this was not good for me as I bleed heavily. He told me I would benefit as most do. Started taking it. After two weeks the bleeding started for five weeks and I had to come of it. I was so weak. I asked him what to do now. He said go back on the combi. I told him that had made me miserable and I felt sick on it too. I had Panick attacks on it too. He sort of said right well it's up to you and that was that.

I called again in may. Told him the iron tablets were making me feel sick and constipated. I asked for a liquid as I had been on tablets months. He said give them another month and prescribed me lanzaprazole. I looked in the leaflet and it said stops iron absorption. So I decided he once again had just shoved something at me without considering my whole issue.

I phoned up again in June and got the female. I said I still don't feel well. Still having bad periods. Spotting etc. She said have you taken your vitamin d. I said what vitamin d? She said you are very very low on that and should have been taking it since march. So the male Dr missed that on my notes.

I called up in July as nothing was improving and I was getting stronger hormonal symptoms like Cramping middle cycle. Dull aches in ovaries. Headaches. I explained I was struggling to take my kids out because I never had the energy and was always worried about becoming Ill away from home. I explained in my first three days of my period I can just about go for walks need where I live. But I can't even visit people because I just pour with blood and would wreck sofas and things. Really embarrassing as I will just gush. He told me I sounded anxious. I said well yes I think that's playing a part now on top of everything. Because I can't relax and just live. He asked me what I was afraid off. If I had ever passed out etc. I said I hadn't done said I should go out. But then sent me links to steps to change for therapy.

Tried to call twice since about the ovaries and bleeding and still feeling rubbish. But they just say coils and therapy.

Thanks for reading this far if you have.

Why do so many doctors push the coil so much? Bleugh.

Sadly OP (and everyone else) some GPs won't refer you because it comes out of their budget. So they do their best not to. I think the NHS has got to the stage where if you don't push constantly you won't get anywhere. Daily phone calls and an insistence on a referral are my advice -in the end they may do it to get rid of you. However, given that you have private health insurance I don't understand at all. Usually they're only too happy to refer you then. Do they know you have private cover?

Failing that, does Aviva have a private GP scheme? Or can you afford to see a private GP?

Vitality does, you can get an online video consultation with a private GP twice a year I think as part of the cover.

Maybe phone Aviva and ask their advice. They may have private GPs they can refer you to, to get the referral to them. This is the downside of private cover - the GPs are still the gatekeepers and either you can't get to see them, or they just don't want to refer you.

He told me I sounded anxious

Yeah I'd be anxious if I couldn't go out without gushing blood everywhere too! Nitwit.

I'm having similar symptoms op but my dr referred me for an urgent scan and I've got an appt to see gyne consultant in November.

Can you look up the referral guidelines? They have treated you appallingly. You need to insist on blood tests and a scan.

They are still trying to get me to get the coil though. No bloody way. It's frustrating that they peddle it so much when I know it won't work for me. Grrrr.

I think they are too quick to bring mental health into it. Which is a very important subject that I'm not downplaying. The thing is even if it was mental health for me and this was all in my head and I had got extremely anxious about nothing, the support even for mental health is a disgrace. If that's how suicidal and anxious, depressed people get handled no wonder suicide Is so high. Here's a link sort yourself some therapy. It will be a long wait though unfortunately!

The way the NHS is run now is appalling.

My best friends vulva cancer was mistaken for thrush for two years. She's lucky a gynocologist asked her what it was when he was checking her cervix for a seperate issue. She said the gp said it's thrush. He said that doesn't look like thrush. He took a biopsy and she had cancer. Luckily two operations to remove it was all she needed.

My neighbour also died ten years ago. Her husband had died a year earlier. So when her stomach began hurting the go said she was depressed. Then she collapsed and rushed to hospital. She was riddled with cancer.

I could go on. But there's only so much a gp can do. They are sat at a desk with a computer and a couple of things like a bp monitor and a stethoscope. They don't have the equipment to truly know what's going on and it's really unfair that we have to try find someone to listen to us. Also they cover a huge variety of issues. They are not experts like that as they don't work in hospitals and they actually cure and operate on people. They are very knowledgeable people who trained hard. But I do think beyond chest infections, blood pressure and general complaints they should be passing things into specialists if they don't improve. There's always a reason for issues after all.

@OliviaBenson

So sorry you are unwell too. Glad you are being moved in the right direction. I should have never mentioned anxiety as that's just made them focus on that.

The coil is just not something I want to gamble on. It could give me more problems. Plus we are not pieces of meat. Why should we have a foreign object full of hormones shoved in our cervix with no way to remove unless you push for that too. I'm sure for many they work. But without risking out cancer, endometriosis, fibroids, polyps, cysts etc first it's wrong isn't it.

Have you actually mentioned to GP that you have private health insurance and want a referral to Gyno?

In my experience, I had an issue with my hand for a few months after falling off my bicycle. The GP had a look and said seems okay, didn't want to do anything further. I mentioned having private cover and wanting an x ray and she was loading up a template for a referral letter before I could even finish my sentence.

Seems like if they think its NHS treatment you want, they are more tentative or there are more steps for them to consider first - but as soon as its private they don't care because its not going to come back on them if they have been overeager to refer you and nothing is actually wrong.

I had a similarly awful time a few years ago now. I have endo, and I suspect a side order of PCOS given the ovarian pains and swelling I get. It's a very long process and it's horrible so you have my full sympathy.

I felt really out of control, like my body wasn't working and there was nothing I could do about it, but a few things helped me regain a semblance of control and normality

• Tranaxaemic acid. This doesn't work for everyone, but you need to start to take it a few days before your period is due. I would take it two days before, along with a few cocodamol and a lot of water. Being very well hydrated stops the cramps and "flushes" you out a little more quickly and easily
• Keeping my vitamins and iron up - taking over the RDA as I was so low. Spatone is a good natural iron supplement if you're low. Zinc, vitamin D, evening primrose, the lot. Every single day.
• The Endo Diet. This was a bloody miracle. Obviously you don't know if you have endo, but it's basically an anti inflammatory diet which works for loads of things. It's a bit of a pain at first, but stick with it. Strictly. For weeks. It has made a huge, huge difference.
• Short term fixes- always have a pack of ibuprofen, cocodamol, pads and clean underwear and leggings with you. In the boot, in your bag, as many as you need in as many places as you need, you will never be caught short if you flood
• Those big Tena pads, the ones that can catch a whole wee, are ideal if you're flooding. You can buy them in bulk on Amazon.
• Force yourself to go out even kf you're worried it's not a good day. Your mood will lift even if you make the attempt. Exercise on the days you can. Try yoga as often as possible. The stretching helps with cramps and flow and it's calming

Don't underestimate how much anxiety plays a part in how you feel too though. Physically managing this is really hard, I know, but there is quite a lot you can do to keep it at a level where you can have some semblance of a normal life. The diet is a big one. I wouldn't have believed it until I tried it myself, my diet wasn't awful to begin with either.

But anxiety does not help, I hate the whole "it's psychosomatic" thing, but it does make things worse and harder, and even if you can manage it, the whole situation will feel less out of your control. I found myself dwelling on my aches and pains, I didn't realise how much I was doing it until I stopped. I was "borrowing trouble" as my mum would say- worrying that each cramp and twinge meant I'd have a really bad time this month, I had X happening at work, how was I going to manage that if it was a particularly bad month, now my head was sore, now I feel dizzy, oh God will I have to cancel now or later, I'm going to flood everywhere....

.... When in reality, yes I was having a really hard time, but the loss of control and worry was making it harder. When I broke it down, yes for 10 days I was bleeding and feeling crap, but there were things I could do to make it more manageable, and there were 20 days when I wasn't, and again if I felt rough on those other 20 days there were things I could try.

I was totally fobbed off too, for endometriosis they basically just seem to leave you until you beg them for a hysterectomy or ablation, and that wasn't what I wanted at that stage. Tbh apart from more and better painkillers I'm not sure what else could be done sadly. But rage and helplessness at the situation made me take things into my own hands and to find out as much as possible about how to help myself. We shouldn't have to do it, but sometimes there's more good information out there that doctors don't even tell you - no doctor ever mentioned the endo diet to me, for example. I am young too, and it was awful to feel like I was going to be so limited for the rest of my life - but although it's never going to go away I've learnt to manage it and I have a good, active life where it no longer holds me back. Sadly I got there under my own steam with very little help from the medical establishment

This is appalling, Op. I’m so sorry. If I were you I would make one further request for a referral, noting all the times you’ve already asked for help; and the fact they’ve told you you have to have a screening test when what you need is diagnosis, which is wrong. And I would explain that if this doesn’t happen asap you will be making a formal complaint. Arm yourself with the NICE guidelines and refer back to them.

Focussing on MH aspects as a cause of symptoms when you’ve failed to properly investigate physical causes is so many shades of wrong, there are no words. As is a GP lacking the basic knowledge and empathy to realise that being left to suffer for months on end with no treatment, no investigations and no diagnosis would have an effect on anybody’s MH, but that doesn’t mean a MH issue is the cause of the problem

I agree with ReallySpicyCurry, having been in a very similar situation. All of the things she mentioned were helpful in managing the situation until I found a solution. Ultimately, using private healthcare, I had an endometrial ablation which resolved the issue for me, but I was in my 40s and at 30 that may not be an option you want to consider as afterwards you will not be able to carry a child. It's a straightforward procedure, and I had the treatment in the morning and came home in the afternoon, but my gynaecologist insisted I think it through over a period of time before he would do the op.

Thank you. I have suspected if I do have endo it's around the left area. But I don't have agonising periods thankfully. I get mild- moderate cramp on day 1-2. It's more the heaviness.

I take vitamin d and iron with vitamin b12 and vitamin c and folic acid.

I will look at the diet thing.

I don't deny that the anxiety I feel is affecting me too. I definitely have a mild case of it. But with the restrictions this year I think I'm just allover like many people. But I have many days when I don't feel anxious at all. I try and go out but on bad period days and the week my period finished I get alot of headaches and weakness and nausea. So it's hard.

I think the next step is Aviva and trying to get some scans done to look deeper into the issue.

Thank you for the advice. I will look at your suggestions. The thought of my life never being any healthier is miserable. I'm heavily relying on my partner to do the school runs and I want to be doing them. They are a mile each way so I've got to be sensible and make sure I can do them. Last thing I can afford to do is get half way there and pull myself and end up in pain and unable to walk.

Christ that is so often the answer to womens health issues isnt it! Hot water bottle. Can you imagine anyone telling a man who was in pain, both dull and sharp, and having bleeding, to use a hot water bottle?

If I thought they might have kidney stones then yes

Interesting with the sti suggestion OP when I had kidney stones, with almost the same symptoms you've described and same localised pain, the doctor suggested I had an sti and actually prescribed me antibiotics I am allergic to to sort it

Then they sent me home without painkillers 😭

I've scribbled on where I'm getting discomfort.

@Chanjer
They always go down the sti road first don't they. Can be frustrating when you have a long term partner, use condoms or haven't had sex for a year because there's always something wrong.

That sounds so painful!

I agree with pp. book another appointment and say. I need a referral to my private healthcare please. Make sure enough check with Aviva what sort of referral(named or general).
If they start pushing other stuff, just repeat. If they start again say, the private referral doesn't come out of your budget but my repeated appointments do.

Or the other thing that has worked before is having the nice guidance to hand if it works in your favour.

Yes to NICE guidance.

Also does Aviva have anything like this - you can use it even if you are a BUPA member: www.bupa.co.uk/health/health-insurance/digital-gp

I meant to say "though" you can use it even if you are NOT a BUPA member although you'd have to pay.

I would go in with a letter to the GP that you read out to them in the consultation and tell them that a copy is in the post. The letter should point out that you have been coming to them with the following physical symptoms for x months now asking that they investigate them. That their limited investigations have failed to provide a diagnosis let alone any effective treatment or palliation and that you feel that the most recent consultations have now focussed on your anxiety which is a result/side effect of the way in which your symptoms are inpacting on your quality of life NOT A CAUSE OF THEM....
Tell the GP that their failure to adequately investigate your symptoms means that you are now formally requesting a referral to a consultant gynecologist for which you are able to use private insurance. You therefore require the referral letter or a detailed written explanation of why they are continuing to refuse you a referral within however many days you consider is reasonable.

I can guarantee that this will get you an instantaneous referral I had to do it with my poor DC who has really heavy and prolonged bleeding.

Definitely speak to the private insurance. Most policies these days have an option for a virtual GP referral. So if you can get access to that you’ll be able to get a referral to a private gynaecologist. Good luck.