If Mirena doesn’t stop pain, it’s not endo? - Endometriosis UK

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If Mirena doesn’t stop pain, it’s not endo?

Hlous profile image
18 Replies

Following a “probable” diagnosis of endo my gynae fitted a Mirena coil and I had to see her three months later. Whilst periods were a fraction of what they’ve been for years and much less painful other pelvic pains still continue. She said that because I still had pain it can’t be endo. Is this right? Ive had a colonoscopy, cystoscopy, hysteroscopy and all come back clear but the pain continues to get worse. A bowel abnormality was detected during a contrast CT which resulted in a laparotomy to look at small bowel but nothing was found. Given I’ve had the constant pain for years I’m at a loss as to why a laparoscopy hasn’t been done. I feel like everyone thinks I’m faking!

Also, does anyone think it’s odd that the gynae didn’t do an exam to see exactly where the pain is?

18 Replies
leah_0600 profile image
leah_0600

Hi Hun, is your gynae a specialist in endo? So sorry about your pain! And yes you can still have pain after the coil is fitted as I do and I’ve got endo xxxx

Hlous profile image
Hlous in reply to leah_0600

Hi - thanks for responding. Im sure she’s a general gynae. I tried to explain all the pains but she simply said if it’s gynae then Mirena would have stopped the pains. Forgot to add earlier that previous ultrasounds not show anything. GP says sometimes pain can be unsolved but it’s so specific I’m sure that there is definitely something wrong if they only looked properly. Grr!

Hlous profile image
Hlous

Thank you, you’ve confirmed my thoughts! I even explained to her that the right sided pain I have feels like something is stuck and at it’s worse feels like my insides are being torn apart slowly - I likened it to pulling off a well stuck plaster slowly. She simply shrugged and said there’s nothing she can do! X

Lewisisgreen profile image
Lewisisgreen

So similar to my journey so far. Really frustrating I know!

The mirena has reduced my bleeding but the pain has been getting worse.

I had a hysteroscopy and the coil fitted in June.

I'm awaiting a colonoscopy as my gyne is steadfastly convinced that my pain and symptoms are bowel related.

He was convinced of this 5 mins into my initial appointment which I was half expecting after years of being dismissed by GPs.

I explained that in my early twenties I think that I was misdiagnosed with IBS when I think my symptoms matched up with endo and adenmyosis symptoms.

However he seemed to have made his mind up!

Never actually examined me either.

He actually said that if the mirena helped with the bleed but not the pain then he would refer me on to have a colonoscopy and he thinks that its not a gynecological condition.

I was confused by this as my symptoms fit and the hysteroscopy actually showed adenmyosis?!

I have struggled with this for 20 years now and the last year has been chronic pain and the bleeding constant (prior to the mirena)

Could you ask for a second opinion or change consultants? If your GP is helpful maby they could refer you to another consultant ? Have you asked for a laparoscopy?

I would keep pushing. Yes there is a chance that could be something else; but you have the symptoms, at least a probable diagnosis and are still in pain and that needs to be explored further.

Hlous profile image
Hlous

I’m in Shropshire. X

Hlous profile image
Hlous

It really makes you question these consultants sometimes doesn’t it! I went through all the bowel investigations even though I was adamant that there is nothing wrong with my bowels (apart from the abnormality a CT picked up but on “Going in” they couldn’t find anything!) and based on period history and initial struggles to conceive Ive queried a gynae cause for ages. I have t actually asked for laparoscopy as I now fear that they think I’m faking! My problem is that if I’m nervous or uncomfortable talking about things I smile! I smiled through labour with each of my kids until the very end! Like you suggested I’m seriously thinking of getting a second opinion from another gynae, one with endo specialism.

Lewisisgreen profile image
Lewisisgreen in reply to Hlous

It absolutely does! I had to really stick to my guns with my gyne and then doubting myself still!

Pretty much the same for me with scans and tests that were clear and still what feels like a mountain to climb to get to the bottom of it. It feels like a fight to get listened to and treated.

I would think about asking for a lap. I am planning too next time.

I understand that they can be reluctant to perform these but it should be looked at as the next step.

I had it all mapped out, symptoms recorded and knew what I wanted to ask.

I thought I had a good shot but my gyne selected what he wanted to hear and dismissed the rest. Even manspailing away my symptoms. Ugg

Next time have asked my husband to come in with me just to see if this helps at all.

If not I'll be asking for another consult.

Wishing you all the best and it's great you are here. Loads of good advice and encouragement to be found🙏🌻

LH38 profile image
LH38

Hi Hlous, I am sorry to hear that no one has given you a laparoscopy! From my experiences with endometriosis it has had it's times like that on the NHS but I was lucky that I could self funded a consultation and from there got diagnosed for the NHS to listen.

I guess they aren't seeing as a problem as you say you have had children? I was pushed after years of struggling with endo and contraceptive pills and pains to the Mirena Coil. I had friends telling me how great it was to others without endo but prolapse problems saying the first couple they had were not seated well and had a nightmare to now having fitted correctly to having no problems at all? I personally hated the Mirena Coil. I had non stop infections and a dragging feeling and felt as if my ovary was about to explode. To be told yes some peoples bodies do not accept it! I gave up and had it removed.

I would definitely push for further investigations via laparoscopy. Good luck xx

Hlous profile image
Hlous in reply to LH38

The dragging feeling is awful! Too much info but I have to go and sit on the toilet sometimes and almost push, like in labour, to try and relieve some pressure! I might actually go to gp and ask to check coil is where it should be as I had it fitted privately and no check on it after 6wks as friends with coil had with NHS. X

LH38 profile image
LH38 in reply to Hlous

I would get it checked to be sure. I never really grew to like mine as it required an injection into my cervix to fit the blooming thing. Lets hope it is a quick fix for you! If you still do not get on with it, at least you tried x

BellyEllieBob profile image
BellyEllieBob

Hi. Sorry you're in so much pain. As others have said it sounds like you're gynae is not that experienced enough on endometriosis.

I had the coil before I was diagnosed and it never helped the pain. I saw a very useless gynaecologist who asked am I sure I'm not just constipated. I meant I'm in my 30s I think I know when I need a poo and when my body is screaming in pain. The ultrasounds don't usually pick up endo, but according to another doctor their guidelines to finding it are awful.

In the end I went back to my gp who gave me a choice of where to go next, and I ended up in a private service through the NHS with a specialist endo consultant. Laparoscopy done and finally diagnosed, 2nd one last month to have it removed.

Go back to your doctor and kick up a fuss, hopefully they will listen to you now, especially since people are becoming more aware of endo.

Good luck

Hlous profile image
Hlous in reply to BellyEllieBob

Thank you for your reply. I’m going to try and get an appt with gp today as I’ve had another painful night and I refuse to accept that there’s nothing more that can be done. X

Hayleyrose28 profile image
Hayleyrose28

Hi

I’m not in the same position as you, but hope this helps to prove you shouldn’t doubt yourself.

I’ve had two operations for endo in the last two years (first one showed severe endo, the second obviously not as bad but still there). During the second laparoscopy, my gynaecologist fitted my mirena. Whilst my periods are undoubtedly lighter than before, they haven’t stopped like they technically should. More importantly, my pain is still there - though I do have other conditions such as lupus which unfortunately exasperate the situation. But I can categorically say that the mirena hasn’t taken the Endo pain away, and this is coming from someone with a confirmed diagnosis.

Just a side note, despite the severity of my endo, it never showed itself on the ultrasound, but my gynaecologist still had her suspicions and suggested the laparoscopy anyway. Please keep fighting and pushing for a laparoscopy if you’re still suffering x

Cathy22 profile image
Cathy22 in reply to Hayleyrose28

my period stop completely after I think just over a yr after having coil in ...I was bleeding non stop for months untill coil went in ...I occasionally get odd spotting for day or two .like very light period . best thing I ever did was have the coil in

Hayleyrose28 profile image
Hayleyrose28 in reply to Cathy22

I was the same, bleeding every day prior to having the mirena inserted. Sometimes people never lose their periods, mine were exceptionally heavy beforehand, and it’s been in for nearly 18 months now. I’m happy that they’re lighter, I was just stating that it’s made little to no difference to my pain personally, we’re all different. Glad that the mirena was a good choice for you x

Deluminum profile image
Deluminum

I can’t relate to a lot of this because my pain isn’t bowel based but my advice is to go to your GP and find a specialist.

I got diagnosed through private because I didn’t want the NHS waiting times but I know my doctor does an free NHS clinic so that may be an option to explore.

Also, sadly one thing we all have to understand is that while we can get diagnosed and find out what’s wrong the pain may still not go away. I’ve had two laparoscopic surgeries and neither have helped a lot so pain management unfortunately may be the next step.

Hlous profile image
Hlous in reply to Deluminum

Sorry to hear that your pain still hasn’t gone after the laps. I did see my gynae privately but I think I should have done more research first! X

Cathy22 profile image
Cathy22

could you have scar tissue or cyst .reason I say that is cause I've cyst on left ovary didn't know was there .and scar tissue on me right ovary from removal of polyp .both some times plays up and gives pain

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