I came off the pill after 14 years a couple of years ago and over the last 11 months I've been experiencing intermittent pelvic pain localised to the left side. The pain can coincide around the time of my period and ovulation but can also appear randomly during other times. The pain can be described as a cramping, stabbing, aching, dragging sensation and can be accompanied by bloating and just generally feeling rubbish. I also seem to now have some pain/ sensation running down the back of my left leg.
I was told by my Gynae that it could be IBS related and have since spent a lot of money seeing a private Gastroentorologist and trying different diets, however, I'm not convinced it's bowel related and neither is the doctor.
I saw a gynae 6 months ago via the NHS and she did mention laproscopy if the pain continues...which it has. (Must say, I was in with the doctor for about 5 minutes and found her quite clinical and dismissive which didn't help). Aside from this, I'm HR-HPV+ and have CIN 1 diagnosed at colposcopy back in June which cause me a lot of stress and anxiety at the time.
I'm becoming really anxious and feeling very down about what could be causing this pain. The fact it's quite localised and occurs outside of period/ ovulation is making me wonder whether it could be related to by abnormal cervical cells and not endo.
I'm just tired of waiting for tests all the while having these pains and feeling anxious.
I'm 33 and am really really keen to start a family but I just don't know whether to find out what's causing the pain first or to just go ahead and get trying. Worried if I wait it could be a long time before I get any answers!
Just feeling fed up and any words of advice or support would be really welcomed.
Thank-you
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Totoro123
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Sounds like it’s definitely worth proceeding with a laparoscopy. Scans and imaging won’t show endo unless it is deeply infiltrating and/or nodules. All my scans were clear but endo was found during lap. I was also on the pill for a long time (about 17 years) and things got worse when I came off. Similar to you, difficult periods and ovulation but also at random times and the way you describe the pain sounds like endo. I had endo on my bowel but even if it isn’t on your bowel it can cause a lot of gastro related symptoms due to all the inflammation. Also if that gyno was dismissive don’t be afraid to see someone else and even better to try find an endo specialist, I wasted time listening to doctors who didn’t care/didn’t have the expertise and when I finally spoke to an endo specialist it made a world of difference. They know more than general gynaecologists and can offer specialist treatment. Hope that is helpful and you get some answers. I was 38 when finally diagnosed so keep pushing for answers xx
Thank-you so much for your response. It's comforting to know that I'm not alone.
Since these pains have started I have had a one period with no pain and then another when I only noticed pain in the days before and after my period. Sometime the pain around ovulation and random days within my cycle can be worse than when on my period- is that all normal? Just seems that lots of people with endo describe horrendous periods but I can have days when I'm on my period and I feel fine!
Again, thank-you so much. Receiving those messages has given me some hope.
Hey, I thought I would reply as I have been in a very similar situation, only just started my journey to getting my pelvic pain looked into properly and over the last year they have also found hpv & cin3 abnormalities, I had lletz 8 months ago but they’ve come back and going in next week for another round!
From what I have been told the cin abnormalities generally aren’t the reason for pelvic pain but it can be really difficult to feel as though you have been listened to when it comes to abdominal pain because of there being so many causes, don’t give up! I think you should definitely speak to your doctor and let them know what has been found in your private investigations and request mri/ laparoscopy for more information because everyone deserves to be comfortable and not in pain!
Honestly the only advice I have is to advocate for yourself as much as possible and not let any one downplay what you are going through as that’s when I started to get more answers! Other than that I completely understand the anxiety of all of these things going on and sometimes it can feel like you have the weight of the world on your shoulders, please make sure you speak to people and try to communicate your anxieties because it really does help, you will be okay and I really hope that you start getting the answers you deserve
Thank-you so much for your response. It's comforting to know that I'm not alone.
Since these pains have started I have had a one period with no pain and then another when I only noticed pain in the days before and after my period. Sometime the pain around ovulation and random days within my cycle can be worse than when on my period- is that all normal? Just seems that lots of people with endo describe horrendous periods but I can have days when I'm on my period and I feel fine!
Again, thank-you so much. Receiving those messages has given me some hope.
So for myself, I start to get symptoms 1/2 weeks before my period and they carry on to around a week after, leaving me with about a week per month symptom free. The lead up to my period is often worst and the first few days are very painful, heavy, lots of clotting etc but there have definitely been a couple of months where I had other symptoms but the pain was barely there!
My general symptoms are getting more as time goes on and unfortunately have now effected my bowel quite significantly which never goes away for me at the moment.
I think the main thing is that if you are in an unreasonable amount of pain and you are struggling to control symptoms or feel like something is off then it should be looked into because it isn’t normal to be in discomfort/ pain all the time! These tests that can be performed can find other issues as well so even if you didn’t have endo you could possibly get answers and the help you need to manage symptoms properly. Everyone’s symptoms are different and there’s a lot of different symptoms with endo depending on where it is etc, some people don’t get any symptoms at all and it’s found when looking for other things so just because your experience isn’t the same as others it doesn’t mean that you don’t deserve to have it looked into just as much x
I was in a similar position to you. I came off the pill after 12 years of being on it. I thought I'd come off as I was turning 30 and perhaps I may want to start thinking about starting a family etc. My period seemed to be pretty bad and some of the time I could hardly walk.
When it got to a point where I went to a doctor, I was very lucky and they recommended an ultrasound straight away. It took 2 or 3 of those before I had an MRI and that's when they found all the endo in my bowel. I was then sent to a specialist centre and they did another MRI there.
My symptoms are similar to what you are describing and I definitely think you need to push to have it looked into if they are not. Endo can seem a lot like IBS.
Needless to say, I'm back on the pill to see if it eases my symptoms.
Very similar situation here. Long time contraceptive pill user, came off as we were wanting to start considering a family and getting to know my cycle... Pain in right side. Pain is worse around my period than my actual period but it means I feel the pain every day (give or take one or two random pain free days). My periods seem fairly regular though but I do get a radiating pain which goes up my back and down my legs. I have had a pelvic scan which found nothing and I have my first gyno appointment tomorrow so I'm really nervous.
I think I'm going to push for an MRI and see if they can find anything there first before pushing for a lap... But we too want to start a family and I don't want them to dismiss me as a result of that... I want to know why I'm in pain all the time, how bad it is and whether it's going to impact our fertility journey... It's already impacted my diet (I eat no gluten and avoid dairy now which has made a big difference) and impacts my day to day and relationships.
For years I thought it was ibs but now I'm off the pill, endo just makes way more sense now.
Sorry to hear you've been experiencing pain over the last 11 months. Like other forum users have mentioned, a laparoscopy is the best way of diagnosing endometriosis. If you take a look at endometriosis-uk.org/visiti... there's a link to a pain and symptom diary which is a big help when speaking to your GP as it helps you to track the frequency and severity of your symptoms.
Everyone has a different experience of endometriosis. Some sufferers can have no pain symptoms and be diagnosed with stage 4 endo, while others can have severe pain and only mild endo.
It's only natural to feel anxiety and stress when seeking a diagnosis and then undergoing treatment/surgery, but finding simple ways to destress can really help some sufferers to feel more in control. If you visit endometriosis-org.uk/endome... and scroll to pages 10 and 11, there are loads of recommendations. I hope you find a couple that work for you!
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