No one will listen to me, being messed around by GP and sexual health clinic

[Lovemusic33]

I’m totally at the end of my tether, I’m depressed and exhausted due to ongoing women’s issues and my gp and sexual health clinic have been useless.

I have been bleeding almost continuously for 6 months, before that I had been spotting between periods, unable to have sex without bleeding and passing large clots when on my actual period. I have been back and forth to the go, given different contraceptive pills, different drugs to slow down bleeding and had been refused referral to gynaecologist. A few weeks ago I was advised to get a coil fitted and was told to call sexual health clinic to arrange fitting, I had to wait ages for a call back because you need to speak to a consultant first, they advised I went in for a STI check to rule out infection before getting the coil fitted, so a few weeks later I went in, had a full check up and was told that I had PID (pelvic inflammation disease) possibly caused by a STI and they gave me 3 lots of antibiotics whilst I waited for my test results, antibiotics made me really unwell and was unable to go outside in the sun. I was confused as to what they were telling me as I haven’t had sex for ages due to the issues I have been having. Anyway, my test results all came back clear, no sti, no infection. In the meantime I got my period and have been bleeding heavily non stop for 2 weeks, I am anaemic and feeling very depressed as I am unable to go about my normal life and obviously feeling very unwell.

I call the sexual health clinic back and ask for an appointment for the coil, they tell me I need another phone call from the consultant before booking me in, appointments are booked up so I have to call back Monday and will then get a call back anytime Monday (if I get an appointment). I work and can’t just wait all day for a phone call, I can’t take calls at work. So now I’m stuck, bleeding non stop, I can’t book time off work as Monday is my first day back after covid.

I have totally had enough, I’m just sat here crying 😢

[emmathedilemma]

Oh bless you, this sounds horrendous. Have you had any investigations to find the cause of the bleeding? The first thing my GP did when I went with heavy bleeding was send me for an ultrasound scan. They really do seem to expect the mirena to be the answer to all bleeding issues but i had one fitted after being diagnosed with fibroids as the case of the heavy bleeding and it made me bleed for even longer every month!!
If you're in the UK have a read through the NICE guidelines and be prepared to quote it to get treatment! I only found this when i was a long way through the process and based on this i should have been referred to gynae a long time before i was. www.nice.org.uk/guidance/ng88/chapter/Recommendations
I totally understand what you mean about the phone calls, the hours they answer the phone or make calls isn't conducive to anyone who has a full time job.....can't ring before / after work because they're closed and similar over lunchtime. I used to sit in my car outside the office to make calls!

[Lovemusic33]

No, no investigation other than from the sexual health clinic. Gp refuses to send me for any tests because I’m young and healthy (I’m 38) 😐, was told to try the coil as it would probably stop bleeding altogether but it seems almost impossible to get an appointment to get the coil fitted, gp told me it would be quicker to go through sexual health clinic but all they have done has misdiagnosed me with a STI and pumped me full of antibiotics that I didn’t need. I have completed all the antibiotics and my symptoms are still there.

[AttilaTheMeerkat]

I would complain to their practice manager about this GP and look into changing GP practices; was this the same person who refused you a referral to a gynae?. What were the grounds for refusal?. You being young and healthy?. You need a gynae referral and I feel you have been both messed around and fobbed off to date.

As you are now anaemic I would go to A & E and get their assessment of you with regards to this.

The mirena seems to be a one stop shop/fix (well its cheap) for such issues but its not suitable for all women to have and I would urge you to see a gynae to discuss this before having one fitted. As someone too who has had similar issues with constant bleeding I strongly feel that the Mirena would not have helped one bit. They need to be finding the cause as well as treating the symptoms. In my case the Mirena would not have helped; the cause of my perimenopausal bleeding was estrogen/progesterone imbalance and a uterine polyp. I self referred to the local private hospital and had ablation surgery, this stopped my bleeding entirely.

[Lovemusic33]

I have recently changed GP’s due to mine closing so there’s not really much option (no other surgery’s near by). Yes, the gp basically said to me that they won’t refer me to gynaecologist until I have tried the coil as they feel it will fix the issues I’m having. The sexual health clinic took swabs and did an internal exam which showed I had pain in my pelvis which is why they said I I have PID but all swabs were clear. I haven’t had my hormone levels checked, have not been offered a scan or any other tests.

[87thstreetache]

Sounds very frustrating and worrying.

Maybe summarise what’s happened in bullet points and send it to your GP. Insist on another consult and be very firm.

[AttilaTheMeerkat]

Endometriosis is not picked up on swabs either. Pelvic pain too can be a feature of endometriosis (I can certainly attest to that fact). And who is going to fit this Mirena coil they keep on telling you about; their own selves?. Infact I would not trust them to fit it properly.

It sounds like they did not perform an internal ultrasound at the GUM clinic?. Although that would not have revealed endo either (its not detected on internal ultrasound scans) it would have shown how thick your uterine lining is.

I would be going to A & E because of your anaemia due to constant bleeding. I bled constantly for 4 months without let up and its truly debilitating.

[Lovemusic33]

GUM clinic said if all tests come back clear then they would suspect endometriosis but they obviously can diagnose this. Gp wants GUM clinic to fit the coil as GP no longer fits them. I was told if it is endometriosis then the coil could help?

[emmathedilemma]

I think you're probably right that they won't refer you to gynae until you've tried the coil....it seems to go tranexamic acid, then the pill or the coil, and then a year or so of suffering that to see if it settles, and then gynae BUT I do think they should at least send you for an ultrasound scan to see if there's an underlying cause such as fibroids or polyps causing the heavy bleeding.

[AttilaTheMeerkat]

Endometriosis is usually diagnosed through a laparoscopy.

Mirena is cheaper than this op and that is probably why it’s been suggested . I bypassed the GP in the end due to my constant bleeding because all this person suggested was a blood test which came back normal. After that I was not able to see the GP again for another three weeks due to there being no appointments available.

Certainly do not go on for potentially another year like this (shudder).

[AttilaTheMeerkat]

I did not even get tranexamic acid from my GP and when I did (via push doctor) again due to no appointments being available it did not work all that well, it certainly did not cease the bleeding entirely

[sleeplessinderbyshire]

Sounds like you are having a tough time OP. May be worth you knowing that Swab negative PID isn’t uncommon but tbh what you need is a mirena. And until you’ve had one for months you can’t say it won’t work.

Unfortunately we are i a global pandemic and face to face medical appointments are still very very scarce. I’m a GP and coil gutter and I have been fitting again for about 3 weeks after five months of not being able to because NHS England and the FSRH advises against it so I wouldn’t have been insured to do it and if something had gone wrong it would have been a disaster.

[Literallyfedup]

Do you know anemia can cause huge blood clots and heavy bleeding too. It is a cycle - heavy period cause anemia and anemia causes heavy periods (something to do with your blood cells getting bigger when you get anemia).My first advise would be to get the anemia fixed. Ask your GP for iron/folic acid/b12 depending on your deficiency which is causing anemia. That should lighten your period. My perimenopause started at 36 so 38 is not really young to hit that spot. Ask your mum about her menopause age. If she was in early 40's then may be you are going through perimenopause.
Try taking some ibuprofen for heavy period next time , it works at par with mefanimic/ traxinimic acid. You can go up to maximum dose as on the leaflet for the day but 3-4 tablet usually does the trick.

[lightlypoached]

Hey OP , I'm sorry you are feeling shit and not getting the support you need. Can I suggest you make another GP appointment and take a friend with you to battle your corner, and insist on a referral. At the very least you need help with iron to combat the blood loss. This kind of treatment makes me mad. If a man was bleeding from his penis for 6 months they'd be all over it.

Get back in there , with support, and demand a referral and some immediate treatment. Tell the GP what you are worried about - ie what you think it may be, and that it's not trivial,or tolerable, that it's affecting your ability to live normally. Be graphic if needs be. I know the NHS is under pressure but trust me, being politely , but insistently challenging does make a difference.

Good luck.

[Neversayn1]

Can you speak to a different doctor as in the same surgery but book in with someone else. Ask for a hospital referral?

[Lovemusic33]

@Literallyfedup

Do you know anemia can cause huge blood clots and heavy bleeding too. It is a cycle - heavy period cause anemia and anemia causes heavy periods (something to do with your blood cells getting bigger when you get anemia).My first advise would be to get the anemia fixed. Ask your GP for iron/folic acid/b12 depending on your deficiency which is causing anemia. That should lighten your period. My perimenopause started at 36 so 38 is not really young to hit that spot. Ask your mum about her menopause age. If she was in early 40's then may be you are going through perimenopause.
Try taking some ibuprofen for heavy period next time , it works at par with mefanimic/ traxinimic acid. You can go up to maximum dose as on the leaflet for the day but 3-4 tablet usually does the trick.

I only get anaemic during a heavy bleed, pretty sure it’s not caused by anything else as I eat well. I take ibuprofen and traxinamic acid but it makes no difference to the bleeding any more, gp feels I have tried everything other than the coil (tried the pill, can’t have the implant).

[Literallyfedup]

Since you have tried everything other than seeing a Gynaecologist you really need to do that. I understand you are not getting anywhere with your GP unless you get a mirena. I have a mirena for heavy irregular periods and for me Mirena has been a saviour. But of course if GP was pushing it like your GP is then I wouldn't have wanted it either. If you do not have too much pain during your periods then have the mirena. Either it will work for you or not. If it does then you are all set , if not you will get further investigation.
But if you have painful periods then you need investigation before getting mirena.

[curlyLJ]

OP I had polyps at that age that needed removing to stop the bleeding in between periods and the heavy periods. You need a gynae referral and you need to push for it with a different GP maybe.

[occa]

Hate to tell you but I have similar and after a long run around I got the coil (Mirena) fitted and it made not a blind bit of difference. I've been bleeding non stop since July and am ridiculously anaemic.

[OhTheRoses]

What if a woman does not want a Mirena coil? I didn't think treatment was mandatory.

I am sorry GP but I don't want a coil pthank you. I do, however, want to know the reason for this bleeding and to discount anything sinister. I wish you to refer me please to a gynaecologist. If GP refused ask for the refusal to be clearly noted in your records. Bet the GP won't refuse to refer you privately.

To be fair though, dd started having problems with implant (frequent and lengthy bleeding). Was removed at sexual health clinic. No change. GP referred for a scan and it took three wèks to be offered an apt. All since June so during Covid.

[cuteglasses]

Have you tried taking evening primrose oil?

[occa]

@cuteglasses

Have you tried taking evening primrose oil?

Ooh I haven't tried that! Does it help? I'll basically try anything at this point ha ha

[Lovemusic33]

@occa

Hate to tell you but I have similar and after a long run around I got the coil (Mirena) fitted and it made not a blind bit of difference. I've been bleeding non stop since July and am ridiculously anaemic.

The anaemia sucks, I feel so tired all the time, an hour after getting out of bed I feel I could have another sleep. I have just stopped bleeding after bleeding heavily for 14 days 😭

[mrbob]

I feel like you should be having an ultrasound... This all sounds a little weird

[occa]

The anaemia sucks, I feel so tired all the time, an hour after getting out of bed I feel I could have another sleep. I have just stopped bleeding after bleeding heavily for 14 days 😭

Yep it's the worst! Sometimes moving from the sofa feels like so much effort.

Should mention, I've seen a gynae, had 3 ultrasounds, been put on low dose hormones and had a d&c as well as having the Mirena. Nothing helps, I can't get any answers.

I really really hope you have better luck.

[Elieza]

That’s so exhausting OP. I remember that well.

I had continual periods due to Peri menopause.

Went for private acupuncture £50 a session. Had about six sessions and my periods became light, regular and manageable.

I know that isn’t a solution for everyone due to cost but it helped me greatly. I go for top ups now and again as required.