Endo Advice?

[e-m-1029]

I am new here, I have had symptoms since coming off the pill in August and I am in a lot of pain. I've been told it could be endo but they can't do anything about bc of Covid-19, any advice?

I have stabbing pain in my lower right abdomen and it feels lumpy (like peas under the skin)

I feel at a loss, I've been to the doctors multiple times a week trying to get some answers.

[Lauren_G]

Hi my story is similar too yours I come off the pill fell pregnant quite quickly sadly had a miscarriage and then after that started experiencing pelvic pain and lower back pain for months I was back and forth doctors suspecting it being endo but they was quick too say they didn’t think it was as my periods were light and pain free just suffered pelvic pain I new something wasn’t right so I was very persistent changed my doctor and finally got refered too a gyno back in July with the current situation the wait for laparoscopy was longer then normal finally had my laparoscopy 3 weeks ago and they found mild stage1 endo and removed it there and then I also experience the stabbing pain around the time of ovulation and I get that every time I’m ovulating do you track ovulation? The stabbing pain could indicate ovulation? I honestly feel for you as I felt at a loss for about a year too where I felt no one was listening too me all I can advise just keep pushing and pushing for a referral and keep on their case I really hope you get answers soon. Xx

[e-m-1029 in reply to Lauren_G]

Thank you so much for your reply, even just hearing someone understand how I feel is reassuring!

I came off the pill in August but my periods took a long time to settle down into a normal cycle so i didn't have my first one until recently (So only had 2 since august). So i haven't been tracking ovulation, however I did think this is what it would be but i have never experienced it before and didn't know what it feels like. I have had this constant stabbing pain for around a week and a half now could that still be ovulation? I just have what feels like little peas under the skin where that pain is.

I'm going to keep pushing after christmas as my GP is in my university town unfortunately and cant travel

Thanks!

[Lauren_G in reply to e-m-1029]

I never experienced anything until I came off the pill the pill masks everything my body is completely different different pains twinges different times of the cycle I would track everything on flo so you can then look back and see if it is cycle related. Normally mine last for around 24-48 hours but has lasted longer before. I think I have also had that pea like feeling before. Just keep pushing and pushing for it and I really hope you get some answers it’s not nice dealing with it on your own I felt like for the last year all I ever spoke about was my pain and worry’s it really does take it’s toll so speak too someone and keep on at the doctor xx

[Anna_EndoUK Moderator]

Hi e-m-1029, I also had a similar experience to you, I was on the pill for a long time and then when I came off it all of my endometriosis symptoms started :-(. Unfortunately, I think this happens a lot.

If your current GP isn't very helpful then try to get an appointment with a different one - you are always allowed to ask for a second opinion. And although COVID has slowed everything down, most gynaecologists are still doing telephone appointments.

Also, it might be worth keeping a symptom/pain diary if you have the time. It can make it easier for GPs and gynaecologists to understand exactly what you are dealing with day-to-day.

There's one on the endometriosis UK website here: endometriosis-uk.org/sites/.... There are also several symptom tracker apps if you prefer to record things on your phone. I used to use one called Phendo, but there's plenty of others.

Also, here is a link to the NICE Guidelines: nice.org.uk/guidance/ng73/r...

These are the guidelines that healthcare professionals are meant to follow if they suspect someone has endometriosis. Sometimes bringing a print out of them with you to the GP appointment (or just mentioning that you are aware of them) can mean you are taken a bit more seriously.

I hope this helps, keep pushing until you are listened to! xx

[LittleBlossom]

Hi, Sorry to hear your suffering and not getting the support from GP. It's interesting reading your post and some of the replies. I have had approx 6 years of various symptoms, umpteen investigations and eventually started HRT for peri menopausal symptoms. I came off the pill last year and since then the abdominal pain and lower back pain has increased in intensity. I have long standing muscle/joint pains/aches which I always put down to work, weight, lack of fitness etc but over the last year Osteopath has been able to tell me almost exactly when my period was coming based on my increased symptoms (baring in mind my periods are not at all regular over the last year and a bit) it was her who first mentioned Endo to me asking if I'd been diagnosed with it. At recent meno appointment (first one) I mentioned this and the response was yeh probably got it but on the positive it will go after menopause!

Hope you manage to get some answers and help with it e-m-1029.

😀