Pain but no period, could it still be endo? - Endometriosis UK

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Pain but no period, could it still be endo?

0Jasmine profile image

Hi,

I was just wondering if anyone else is experiencing ongoing pelvic pain even though they have no periods or very little spotting (I have the mirena). I was told by my gynaecologist the mirena significantly reduces pain as it reduces bleeding but I’m still experiencing at least 20 days of pain per month.

Thank you

29 Replies

Hi Jasmine,I have the Mirena and am on the pill and have the same experience as you. Currently sitting here with pain in my pelvis, over my ovaries and down through my legs but am not bleeding. The pain doesn't seem to have any pattern these days - it used to be cyclical but I can't predict it now.

I'm waiting for a laporoscopy. From scans it's suspected I have endo and adenomyosis.

0Jasmine profile image
0Jasmine in reply to Kricam78

Sorry to hear your not having the effect it’s meant to either! How long have you had it? I’ve got a gynae appointment Monday and after 9 months with coil I think I’m going to ask for it out but very nervous!

Kricam78 profile image
Kricam78 in reply to 0Jasmine

I think I've had the Mirena in for about 2 years now. I knew it wasn't helping after a few months and asked to go back on the pill. They would only put me on the mini pill though and didn't help either, so now I'm on the combined pill!I want mine out as well but it really hurt when it was put in. I did work up the courage once and went to a clinic but they wouldn't remove it as they wanted my gp to talk over alternatives with me first. I've wimped out since then.

0Jasmine profile image
0Jasmine in reply to Kricam78

I know I’m terrified but I actually think the pain was better before, knew when it was coming etc rather than being spread out. I’ll keep you posted if you like.

Kricam78 profile image
Kricam78 in reply to 0Jasmine

That certainly makes sense. Yeah keep me updated. I think I'm gonna man up (as it were) and arrange to have mine removed. If only they could knock you out for it!

0Jasmine profile image
0Jasmine in reply to Kricam78

Just had it out and no pain at all! Nearly passed out thinking about it coming out but honestly there was no pain and felt less uncomfortable than a smear x

Kricam78 profile image
Kricam78 in reply to 0Jasmine

Ah brilliant. Well done you for working up the courage! I still haven't looked into getting mine out but I have had my laporoscopy date set for December 30th so I'll jump that hurdle first and then the coil!

Vps1980 profile image
Vps1980 in reply to Kricam78

Getting it out hardly hurts in comparison to having one inserted xx

Bellybear profile image
Bellybear in reply to 0Jasmine

Hi my daughter has had coil in for 4 months and getting severe pain lots and still bleeding lots so clearly not helping her so hvg it removed Monday. Hoping she will hve a laparoscopy soon but she’s been suffering for years and it’s taking sooooo long. Good luck 😉

Yes, I have chronic pelvic at randomMoments and Endo diagnosed in 2006. For me, I have had 3 mirena’s in and out 2006-2018. Whilst insertion wasn’t pleasant, it was all over very quickly and you take pain meds before you go. Logic?! Common sense?!

I recognise our Mirena insertion pain is personal to our unique bodies but I really don’t like the scaremongering of insertion pain. That thing gave me a good life from 2006-2018 and that was so worth the discomfort of insertion. A 3 day period requiring a panty liner, zero pain…..I was living my best life with energy and vitality, something I don’t have now.

So whilst my Endo came back in 2018 and I am a mess again, after my next laparoscopy, I will have another one inserted. Am I looking forward to insertion? No. Will it hurt, probably. But nowhere near as much as Endo pain/pelvic pain. The pain is less than 5 minutes. Oh and I have never been pregnant either.

Rant over! Stop the bloody Mirena insertion scaremongering ladies. Take some pain meds, go get it done because there’s more pro’s than con’s. The more you relax your body, the easier insertion is.

0Jasmine profile image
0Jasmine in reply to 635703

Thanks for your reply and sorry to hear you’ve had symptoms and pain for so long and I hope it gets better for you soon.

While the mirena insertion can be painful I agree it shouldn’t stop you having one inserted. Unfortunately for me it’s not had the same effects and throughout the last 9 months I have had more pain than I feel I did before. So I’m looking at what I can try next.

635703 profile image
635703 in reply to 0Jasmine

So sorry to hear that x x x Hope you figure it out quickly x x x

I have pain every day, no matter where in the cycle I am! It gets worse at ovulation and during my period, but I have stage 4 endo and it absolutely causes pain even when not in the cycle. Which makes sense if you think about it - the endo tissue often quite literally fuses organs to each other in ways they aren't meant to be connected. So every time those organs try to move in their usual way, that's going to cause pain. I've run into the line that the mirena reduces pain because it reduces bleeding, but it only reduces bleeding for the uterus, not for any other endo tissue outside the uterus. Also, a lot of pain from endo, as I just said, is caused by organs being stuck together when they shouldn't or by cysts running into pressure as things move around in your pelvis. The mirena coil isn't about to help with any of those things!

I would go back to you gynae and say exactly what you say here - that you have pain at least 20 days per month, and explain what that pain is. Maybe document it as best you can if possible, so you can show them your notes. The important point is that you are still experiencing pain, and therefore you still need and deserve help. It doesn't matter if they think the mirena reduces pain for many women; it isn't solving all your problems, so they need to be looking at other options regardless.

As for keeping the mirena or not, there are a few factors to consider. One is whether it has improved anything outside of pain, or even if it has improved the pain at least a little bit. Be honest with yourself here! If so, it might be worth keeping, if not, take it out. Another factor to consider is the difficulty of putting a mirena coil in. If you were conscious when they did it, you know what it's like and can judge for yourself if you want to go through that. But if they did it during surgery, you may want to consider whether it's causing harm and therefore worth taking out, since if you take it out and things get worse, it's not easy to put another one in. And one more thing to consider (though it seems unlikely?) is whether you have adenomyosis in addition to endometriosis. Adenomyosis only affects the uterus, and the mirena coil is the only way to reduce adenomyosis symptoms outside of removing the uterus entirely. If you do have that condition or your doctor has suggested you might, it might be worth keeping the mirena coil in for that reason. Obviously it's your choice, and you've probably seen or heard these points already, just thought I would share as someone who also has debated taking the coil out due to no visible benefits!

0Jasmine profile image
0Jasmine in reply to hrcArch

Hi

Thank you for your reply and sharing your experience. Do you think it might sound like my endo is elsewhere outside of the uterus if I still have this ongoing pain? I felt I had some pain outside of period cycles before but I didn’t keep a diary before the coil so it’s hard to tell but I feel the coil has made the pain worse in regards to frequency. I have a gynae appointment on Monday and have done a flow chart as I thought it was the easiest way for me to get everything down! Have you kept your coil in? I can’t take the combined pill so only option would be progesterone only but I had really low mood with that years ago when I didn’t have these symptoms. I think the lap waiting list is about 15 months or maybe longer so it’s a long time away. Thanks again for your message x

hrcArch profile image
hrcArch in reply to 0Jasmine

No problem! I'm not sure what you mean by elsewhere outside the uterus, since endo is always outside the uterus - endo is the tissue growing outside the uterus, adenomyosis is the tissue growing through the uterus. If they haven't done a lap, then they can't know exactly where all the endo is because there's no other way to see it all.

I've kept the coil in for now because I have trauma related to that area and I also have adenomyosis, so keeping it in for now made sense even though I can't tell if it's doing anything at all. I had to wait 15 months for a lap with an urgent case, but that was between December of 2019 and May of 2021, so hopefully the wait times have shortened now. But I did have an MRI where they checked for endo, because they can sometimes see it on an MRI, and there was enough there for them to diagnose me without a lap.

Two things I would note here (sorry, brain's not fully functional today) - First, you are still in pain, so you still deserve treatment even if the lap waiting times are 15 months away. They should still be doing everything they can to help with your symptoms. Make sure to be very clear about your symptoms at your appointment; statements like 'I am taking X number of 30/500 co-codamol every day' or 'Every time I put my foot down, I get a shooting pain through my hip that makes walking extremely difficult' or 'I miss x number of days of work every month because of this pain.' I tend to use 'I've been to A&E X times this month,' which often helps a lot. Be honest, so don't stretch the truth, but also don't sugar coat it either. That way they can get a much better sense of how much pain you're in and how they might be able to help. And second, if they haven't already done them, ask for other tests like an MRI that might point to endo, but also any other tests for other illnesses that might cause that type of pain, since there might be more than one at play here.

I'm currently using the coil and am trying yet another progesterone only pill, but none of them have worked for me. We're at a point where if there's no improvement in the next couple of months, we're going to start talking about hysterectomies. I'm very much hoping you are much further from that discussion than I am!

0Jasmine profile image
0Jasmine in reply to hrcArch

I meant rather than it being adenomyosis sorry. That makes sense to keep it in. I’m hoping it won’t take too long and your right that the waiting lists have maybe shortened and I’ll ask to get an MRI in the mean time. I had been referred for another ultrasound but not sure if that would be useful considering how hard it is to see on one. That’s a good idea to note down exactly what I’m needing to take and I’ll take my pain diary in with me. I ended up doing a flow chart (I know) just because a list of Q’s didn’t help me last time and threw me off so didn’t ask what I needed to with also feeling like I wasn’t being listened to. That’s such a shame, it’s awful having all this pain and battling against the services alone to then have to look into that. How do you feel about it? I really want to have children so I’m hoping that happens before but I would consider it if this pain doesn’t improve xx

Me!! I've found that although my new pill Cerelle has helped with the bleeding massively (I've had maybe three periods since February) my pelvic pain has been on another level. To the point where I'd need a hot water bottle belt just to get through the day (there's a koala one on Amazon and it helps so much relieving some pains around that area while being hands free!!) So my new gynae actually put me on Amitriptyline which is an antidepressant medication typically used for people with chronic pain and IBS. I'm only on my second week of 10mg and while it absolutely knocks me out by 9pm, I've noticed slight improvement in my pains

I'll see how the next week goes but currently I'm considering upping it to 20mg just as it's not helped quite as much (can keep increasing until 50mg)

I'm very similar to you where it's essentially every day of the month, so it may be worth asking questions about trying this medication or something similar if you haven't already! I hope things ease for you soon angel X

0Jasmine profile image
0Jasmine in reply to ArtyPal

Thank you for your reply and I’m glad you’ve found something that has been helping you a little! That water bottle sounds great, il have a look! I was about to try amitriptyline but holding off until this gynae appointment as I’m wondering if the coil is taken out then it will be good to see how the pain is and then try something else when I know if that makes sense x

ArtyPal profile image
ArtyPal in reply to 0Jasmine

That makes complete sense!

I'm glad you're taking control and doing it all at your own pace, I really hope if you do get it removed that it helps the pain! I'll have my fingers crossed for you x

I’ve been on a pill and then on Mirena for quite some time and came to gynae with constant pelvic pain and also very regular stomach pains (that would fall on what would be my period but I don’t bleed just like you, I just get other symptoms like swollen breasts, spots and mood swings). I was also told it’s unlikely I have endo because I’ve been in hormonal therapy on and off since I was 14, I was referred to a gastroenterologist to investigate pains and nothing was found that side. So I pushed for a laparoscopy - I went private so didn’t really have to push but more had to convince myself I’m not imagining this pain and it’s worth cutting myself open when everyone sort of tells me it’s not likely I have something. But I couldn’t function properly for 3 weeks of the month with all kinds of symptoms, so went ahead and guess what: I was diagnosed with endo there end then as soon as they looked inside.

You can have endo even if you don’t have period, so you can’t say you have a ‘painful period’ and if you’ve been on hormones for long time.

So ask your gynae to do all they need to do to check. Mine has gone for ultrasound, then MRI but of course laparoscopy is the only reliable way to diagnose to if you want it - ask for it. Sounds like we are in quite a similar situation so feel free to reach out to talk more about it! And hopefully you will feel better soon XX

0Jasmine profile image
0Jasmine in reply to st07

Hi thanks for your reply and sharing. It’s so frustrating isn’t it when you don’t feel your getting anywhere but well done for pushing and getting that laparoscopy. I’ve looked into private but I don’t think I could afford it and have no private health insurance. Did your MRI pick up on anything? I’m going to ask at my appointment about being referred for a few other tests too when I see her. How are you feeling after your laparoscopy now? Do you take hormonal medication still to help it? Thank you and likewise feel free to message when ever you want x

st07 profile image
st07 in reply to 0Jasmine

It is frustrating.. what helped me is when I first went to gynae I have made a cluster map of all my symptoms, so whenever in the journey I got stuck not knowing what to do and especially deciding to go for laparoscopy, I just thought: am I willing to continue living with these symptoms?

I realise how lucky I was that my work private insurance covered it, it did come up all in all with all consultations to quite a sum. After my first gynae consult I was sent to gastroenterologist so the MRI was requested by him and to check for Crohn's disease and some general gastro functions. It did not pick up on that side but picked up a bloody cyst, that's why I was sent back to gynae. Prior to that I had 2 ultrasound scans: one at a fertility clinic and it picked up nothing abnormal at all, and another one by the gyneacologist (the one who in the end did my laparoscopy) and it also showed nothing suspicious: it showed a small cyst but she did;t think it was an endometrioma either! And then I had 2nd stage endo all over the place once I did laparoscopy, so really there is no other way to tell..

I still have Mirena coil, it is due for replacement next year and I think I'll keep it... I'd like to be able to move away from hormonal medication but from my understanding endo is caused in some way by hormonal imbalance and the coil should help balance it out. ideally it would be nice to treat the cause of the imbalance but science doesn't know what it is yet...

I am feeling significantly better in some aspects: I do not have upper stomach pains on a monthly basis, I feel fatigued maybe 3-5 days out of the month instead of 20-25, I hardly ever feel nauseous. I do still get lower pelvis pain but not as much (still too much to my liking) and my digestive symptoms (awful bloating and constipation) are still with me, so I am trying a fodmap diet to see if I can find my triggers. Pain with sex is back to some extent too. really, there was only about 2-month sweet spot after surgery and recovery from surgery that I was free of all the symptoms, and then some of them came back. So I am a bit wary of what future holds and just trying to change diet/lifestyle and anything else that might help while I still feel quite good in case it gets bad again...

Sorry for the long post!

Vps1980 profile image
Vps1980 in reply to st07

I totally agree with you about hormone imbalance, progesterone starts dropping in your 30s but all they offer us is unnatural progestins, unless you take estrogen that is xx

Hello.

I can confirm that when I had the mirena I still had a cycle which was incredibly painful but little to no bleeding each month.

After a battle with the doctors, I had the Mirena removed and my natural period has returned for a few months landing exactly the time of my cycle when my pain was at its worse with the Mirena in.

My gynae dismissed me when I suggested I was still having a cycle with the Mirena in but pain wise it hasn’t changed at all without it and the dates are the same when monitoring my cycle and pain, so I was definitely having a cycle just minimal bleeding.

Hope that makes sense.

Best wishes to you xxx

0Jasmine profile image
0Jasmine in reply to Lily1986

Hi thanks for your reply and sharing. That’s really helpful to know although sorry to hear it didn’t help you either. How long did you have it in for and are you taking any other hormonal stuff now? Thank you xxx

Lily1986 profile image
Lily1986 in reply to 0Jasmine

Aw you’re welcome. I had it in for almost three years but gained so much weight and bad skin too which still hasn’t gone back to how it was before. They gave me degesterol but having a break from all hormones for a bit as aside from the reduced bleeding none of them help the pain nor disease reoccurrence. Each time I’ve had excision surgery the disease has returned within less than a year.

Also tried the chemical menopause (with decapeptyl) twice which was horrendous and won’t ever have it again plus since then I’ve developed spinal stenosis and Spondylosis.

Xxx

0Jasmine profile image
0Jasmine in reply to Lily1986

It’s horrible all the side effects, I’m currently still on thrush medication as I have had thrush for two months with nothing helping. Never had thrush before so I know it’s the coil. The thrush treatment also gives me gut pain so you can’t win! Sorry to hear that. I think if the coil comes out I will be looking at pain management rather than normal management. I’ve looked into the injections but doesn’t sound great! How was it for you?

Hi, I’ve never had the mirena so can’t comment on that but I still get pain even when I’m not bleeding ☹️ I’m on the pill xx

0Jasmine profile image
0Jasmine in reply to ZiggyandBC

Thanks for your reply and sorry to hear you also have pain when your not bleeding. Take care xx

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