Endometriosis UK
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Endometriosis without periods?

Hi all.

You'll probably have seen my previous posts, I'm waiting on a gynaecology referral. However my GP strongly suspects endometriosis. I've had symptoms ever since I started my period at 15 (will be 24 this month). I've been on the Depo Injection for years (roughly 4), and it's the only birth control that's been any relief for me however it has stopped my periods completely. I'm still getting classic symptoms of endometriosis though. Minus the periods obviously. I'm just wondering, is it possible to have endometriosis even though I'm not getting a period every month? Maybe the injection has kept it at bay or masked it in some way? Thanks in advance ladies. Any help much appreciated. I feel quite alone at the moment tbh, and feeling worried. Been dealing with this near enough 9 years and struggling. 😔😥 Xx

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I am having endometriosis symptoms (pain, fatigue, cyclical bowel and bladder problems) despite having no periods since I had the mirena coil in. Previous to this my periods were very heavy. I’m afraid I can’t be any more help than that as I have no official diagnosis and I am just waiting for my next consultant appointment. If it can still be endometriosis without the period is certainly a question I will be hoping to get the answer to. It is a very long awful road to diagnosis and terrible that we are expected to just get on with it when it has such a massive impact on our lives. I would struggle without the support and answers I find in this group. Hope you feel better soon x

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Thank you very much! I'm in the exact same boat as you with symptoms, as you say it's so frustrating we're expected to just get on with it. I'm 4 weeks into the 12 week wait time. But hoping to get a cancellation. Take care, and feel better soon too. Xx

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I was referred back to gyne for the second time on 1st Feb and my appointment is 30th April, can’t come soon enough!

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That's good you've not too long left to wait. Good luck with your appointment! 😊 If you don't mind me asking, how long did you wait for your first/initial gynaecology referral?

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Referred January/February 17 and I was seen in June , it was about 16/17 weeks. It would have been the same this time, but when I got my appointment letter I went online to see if I could change it and it knocked almost a full month off-I’m not sure if I was just lucky and picked up a cancellation or if they do send them out at the max time!

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Thank you for your replies! I'm 4 weeks into a 12 week waiting list but am on cancellations list so fingers crossed 😊 glad you've got your appointment soon and good luck with everything! X

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Hi, I’m lexi I’m 23.

The answer to your question is yes! Both me and my mum have not had cycle for over 63 days with both of us both being diagnosed with a left ovarian endometrioma cyst.

When I was on the injection I never had cycles but I used to get the cramping when it was due but no bleeding. Last year I was told I had to stop the injection give my body a rest then I was put on Cerelle.

During my time on that pill I had regular periods, until during Christmas I had a cycle that lasted a week then 2 weeks later I had a cycle that lasted 3 days to that point I had a greyish sack fall out of me x eeekkk I know.

Since the 8th of jan 2018 I havnt had a cycle.

In fact having endometriosis you have irregular cycles some months you may get a cycle some months you won’t.

If you haven’t any gyno problem go to your gp.

I was okay refereed to have a transvaginal scan because endometriosis runs in the family big time. But also because I had lower abdominal pain everyday, it’s like a dull ache that doesn’t go away. The doctor was very concerned so he sent me for a scan.

Please see your gp

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Thanks very much! That's a great help 😊 I have seen my GP, who suspects endometriosis so has referred me to a gynecologist. Just waiting on referral x

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Hi,

In regards to your question, I am in that exact situation! I was diagnosed with endo last November after 7 years of symptoms, I am on cerrelle and have the mirena coil so no periods but I still have pain everyday. It was a lot worse when I was having periods, the pain was much more intense and related to my cycle. Now it is a dull ache with fatigue but it's much more manageable!

So I would say yes, pain without periods does happen, but at least in my experience it's a whole lot easier without periods 🙈☺️

Take care and stay strong xxx

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Thank you! Good to know I'm not the only one going through this situation. 😊 How long did it take you to get diagnosed if you don't mind me asking? I'm just waiting on a gynaecology referral, just trying to cope in the meantime! Hope you're feeling better, xx

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You are definitely not alone ☺️ It was a bit of an ordeal if I am honest!

Since my GP suspected endometriosis it took 5 months, however I have had symptoms since I was 17 (I'm 25 now) and was diagnosed with IBS, anxiety, and having a hormone imbalance until November last year when I had a diagnostic laparoscopy!

Now on a 7-12 month waiting list to actually remove the endometriosis. But knowing what all these symptoms actually are has been one of the best things of the whole process. Now I don't feel crazy and people actually believe me when I say I don't feel good 🙈

It can be a long journey but we will get there in the end and we all have each other! X

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Thank you so much! I've been diagnosed with IBS for about 3 and a half years now. Only recently has my GP said it could be endometriosis. Thank you for your replies, hopefully this is a step in the right direction 😊 xx

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Definitely - I had horrendous periods as a teenager which I was told would settle down but into my 20s would be sick, very sore and very tired etc and none of the contraceptive pills agreed with me so I finally tried the depot injection which was fine and I didn’t get periods but I still got the pains and sickness. Btw just on a different note I’d have that reviewed if you’ve been on it as long maybe different where you are but I’m sure I got told it was for a maximum of 2 years and my friend got taken off it also.

Anyway...I came off that and went onto the implant and didn’t have any periods at all still but got a lot of side effects from that. Eventually I said I’d had enough and asked for the what felt like the 10th time to have it out and they agreed. This is when it became more obvious about the issues with my cycle for example, one week hardly anything then on the second week of a period it was hellish and then nothing for 6 months and would have just a couple of days of a period but a 3 month build up of symptoms. I was made to feel like an idiot for requesting/pushing for a laparoscopy once I was in with an endo clinic and when I got it 2 years ago I have endometriosis but also a lot of scar tissue from old endo too which has covered my ovary and ureter and pretty much the whole of my left side. They fitted the mirena coil and for the first while I had horrendous cramps and periods but now I have them regularly say every month and get a few days without pains after I’ve had it and then others like now I’ve had 2 months of building up but still not had one. Long story short, you very much can have symptoms that don’t relate to a typical cycle, I’ve had specialists say that’s not the case but I think that from my experience and a lot of what I’m reading on here and a friend that has it that it’s clear it happens and we know our bodies, they don’t. When you get to your appointment try to take someone with you, I’m very confident and can speak up for myself but I have burst into tears in every appointment from either being made to feel stupid or pure frustration or just someone asking what I want from the appointment. I think some of that is the length of time left suffering and finally opening up about it or a relief that you feel something is happening now.

Good luck with your appointment, from my big ramble here (sorry about that) the main bits are... take someone with you and remember you know what you’re experiencing and no one else can tell you what it feels like or that it “can’t be” how it feels!x

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Don't apologize. It's good to hear other people's experiences and I really appreciate it 😊 did say to my GP about coming off depo, however she said as it's the only thing keeping my symptoms at bay to a certain degree she wants me to stay on it atm. Gynecologist may well say otherwise x

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To be honest I think it’s just one of those things where everyone has a different opinion and obviously it runs the risk of affecting your bones so maybe my friend and I were at an increased risk, who knows! If you’re getting referred anyway it’s probably best to keep things the way they are until they’ve reviewed you!x

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Hi there,

I’m Nadine. I don’t even know where I fit in anymore! I was diagnosed back in ‘08 after 7 years of no help and over 30 admissions. So then after diagnosis I had the zoladex injections in ‘08 which put me through the “chemical menopause”. It also didn’t help and it was 9 months of hell. Anyway, to get back to the topic at hand! Ever since the zoladex, my body has rejected every single synthetic hormone. Tried many pills, coil, depo in very high dose tablet form, my body goes mental. Basically I haven’t had a period in a year this month. And the year before that I only had 3 buy they were 3 of the worst periods I’ve ever experienced and it actually scared me because of the pain level and I don’t scare easily after doing this for so many years. Before that I’d have a period every now and then. So this past year, I’ve been in agony, horrendous pms, night sweats, bowel pain and everything else you can think of but no menstruating.

So yeah hon, try not to worry. A lot of us still get “periods” just no menstruating if that makes sense. I get daily pain like a lot of the ladies say but just have to deal with it.

Also reading kimmys post, I don’t understand why they didn’t remove the endometriosis during the first lap. It’s not fair because it’s just putting her through another lap unnecessarily. Sorry to hear that kimmy, I don’t understand that.

Also from Jennabird, she’s spot on about the appointment. I’ve been told it’s in my head more times than I care to remember. I’ve cried, I’ve got frustrated and I’ve got angry. That’s just my bad luck with the gynaes I’ve seen which is 4. So like Jenna says, def take someone with you because I’ve come out of many appts not remembering anything. The advice I wish I’d had before my first appt is to stand firm regarding your situation. Try to write everything down beforehand and if possible, if you know the name of your dr, look him up, he/she should be on the hospitals website and whether they’re a specialist or not, Just to give yourself a heads up.

I’m sorry I’ve written so much but I’m incredibly passionate about helping other women like yourself and those who are fobbed off or aren’t given any information. The best thing you can do about endometriosis is educate yourself as much as possible. The average diagnosis time is 7 years and I was spot on 7 years. I’ve learnt so much that my GP even admits that I know more than she does. One last thing, if they are going to do a lap (which they definitely should), ask them if they find endo are they going to laser it or have it excised. Because excision is the only way to remove the endo. They’ve used laser on me twice and all of my organs were stuck together. They’ve now proved that laser surgery is basically like treating the tip of an iceberg which means god knows what is going on inside me now.

I really really hope you get the treatment you deserve. And don’t settle for anything less.

Wish you the best of luck Rhiannon and if you ever have any questions feel free to message me anytime. That goes for anyone. xxx

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Thank you so much. That's honestly a great help. Sorry to hear you've been through so much! Yes, I think I will definitely take someone with me to my appointment. Half the time I come out not remembering what they've said 😂I will write down everything I want to say to the Dr. Still no appointment through yet but I'm still only 5 weeks into the 12 week wait. I'm taking 2 x 500mg of Naproxen a day which seems to be helping. I was diagnosed with 'IBS' around 2/3 years ago, and I honestly don't think it's IBS. I'm hoping seeing a gynaecologist will be a step in the right direction to a correct diagnosis.

Thank you so much for the lengthy reply, I really appreciate it.

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No problems my love. I just hope you get the help you desperately need. You along with the thousands of others who just get fobbed off. Hope you’re doing well chica xx

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Thank you so much! I love this community for the support. 😊 I'm doing okay, I got a fast track appointment through so I'm seeing a gynecologist this Sunday. So worried about being fobbed off, but I won't let him fob me off. My most recent blood work wasn't great, low folic and high white blood cells again. I'm just exhausted with it all, but trying my best. 😔 How are you doing? Xx

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