Endometriosis UK
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Help please!

Hi everyone,

I’m new to the community :) so since August I’ve been going back and forth to the doctors and gyanecologist because I’ve been getting these symptoms:

- periods that last 8-9 days

- very heavy, painful periods which cause pain in my back and legs :(

- period pain when I wee (before I start my period about two weeks before)

- general cramping before period starts

- nauseous during period (it’s so bad)

My period basically controls my life, I have to cancel plans as for the first three days of my period I am bed bound. My gynaecologist was useless and said ‘I probably have endometriosis but get the coil fitted and that will help’

I’m worried this is just burying the problem, and I’m so sick and tired of the whole process, please does anyone have advise? Does the symptoms sound similar to yours and how did you all get help?

Thanks all xxx

6 Replies
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Hey, I know how you feel going back and forth to the doctors and gynaes. My doctors must be sick of me by now haha. I don’t get heavy bleeding but have other symptoms such as severe period cramps,nausea, fatigue, painful sex and the list goes on.

Endometriosis is a constant battle with your doctor and you know your own body and know when something isn’t normal. I’m 18 so they kept throwing hormone pills at me and one even tried to induce menopause which a endo specialist dismissed straight away. He thinks I have endo so just waiting for a lap.

Just keep pushing the GP and they have to do something after hormone treatment if that hasn’t worked. A lap is pretty much last resort after painkillers and contraceptive pills

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It's really frustrating, and they shouldn't be dismissive like that at all. But to be fair to the gynae, laparoscopies do carry risks and can leave you with permanent pain from adhesions (I developed chronic fatigue syndrome after mine that I never recovered from) so you need to weigh that up against the need to know if bowel or bladder is at risk, back pain along with bowel symptoms can be an indicator for deep endo. Your period symptoms may also match up well with adenomyosis however, which would require different diagnostics so you may want to read up about that.

For what it is worth, in my experience the mirena did actually completely stop my periods (after a 5 week heavy bleed which I had to tough out ) so might actually be well worth a trial, my surgeon told me that no periods happens for about 1/3 and another 1/3 get lighter periods. The remaining third aren't helped but you do have a 2in 3 chance of some improvement.

I wonder if it may be worth asking for a cystoscopy for your bladder symptoms. It could be interstitial cystitis and also to rule out endo in the bladder.

For me alarm bells to push for a lap sooner (only you know your symptoms best) would be worsening bowel/back or bladder symptoms but make sure you get an endo experienced surgeon, ideally bsge if you can, as deep endo can be missed as apparently different endo types' appearance is very variable.

Hope some of this is of some use to you xxx

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Thanks so much for your advice, it really is helpful xxx

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I get painful heavy periods and pain when I pee but the coil stopped the pain peeing for me 😮 They shouldnt though just insert the coil they should do a lap to diagnose and remove the endo 😮 As I say keep bugging the doctors keep asking 😮 Good luck 🤞🏻 X

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How was the coil for you? And did you get a lap in the end? I’m just so fed up of my periods controlling my life!! Xx

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I've had my coil in for over 2 months its seemed to help with my period pains its made them lighter less painful but it has made them longer and I did have the runs compared to what my periods were like before its like a breeze 😮 I had my diagnostic lap over 2 months ago about 6months after originally going to the gynae 🤔 Seeing a specialist on thursday 😮 Lucky for me my endo was seen to quite quickly but my gastro problems which are the worst things for me I'm only being sent to see a specialist almost 2 year after the start of my pain the doctors have put it off so much I've been fast tracked as an emergency 😮 Anyway keep bugging the doctors tell them if the treatment is not working be honest dont let them push you around 😮 Xx

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