New to endometriosis

[Starfish44]

hi all..

My journey started 5 years ago I noticed I used to bloat a lot 2 weeks before period and leading to period.

My periods also changed from 28 day cycle to 33,35, I also had pelvic pain and shooting pain I would have bad period pains and lower back pain aswell as leg pain but thought this was all normal part of period.

Untill last year I fell pregnant for the first time aged 37 at 12 weeks I suffered a miscarriage

I had an incomplete miscarriage which caused heavy bleeding was very traumatic as my first experience. I went on to have extreme fatigue I was put on vit d capsules which helped for a short time.

I began to notice extreme fatigue, pale skin, dark and eyes, aching legs. Heavy heavy legs bloating and feeling heavy on my stomach

I also started to realise I became very emotional, irritable, short tempered I would snap at friends and loved ones I would start to feel very down depressed around my period.

This is when I requested an appointment with the doctor nothing came from the appointments maybe that it takes time to get over miscarriage and takes time for my body to heal

I continue to have same symptoms and knew something is not right with my body?

I had a telephone consultation with a female doctor who told me my periods are normal because I am still seeing my period but I told her I was concerned for the cycle being irregular and one of my cycles being 46days and the fact I’ve had a miscarriage could it be endometriosis? She dismissed me saying it couldn’t be that just because I had a miscarriage. But I argued my other symptoms could be? She was very rude and not understanding she said so what is it that you want? To send you for a scan I replied YES a that’s what I want because I understand what your saying but NO ONE can be 100% sure about something that is inside your body!!

6 wks later I had my scan 2 days later I had an appointment with the doctor to tell me they can see growth on my fallopian tube and it is endometriosis and am I planning for pregnancy!

I burst into tears and was so emotional because finally after months of having appointments not knowing what is wrong with myself doing my own research follow my gut to push for a scan alongside an emotions of the miscarriage and not wanting to try untill I know what is happening in my body!

I have been referred to a gynaecologist I am waiting for the appointment! Is this what normally takes happens? What can I expect?

I hope this helps anyone unsure or who may have similar symptoms and to not give up if you feel like something is wrong!

Thank you for reading my journey so far..

[Bluebells86]

Hi 👋🏼 I'm really sorry to hear what you're going through...Good for you for pushing to get the scan and must be such a relief to have an answer.

I can't answer your question about what to expect with the gynaecologist because I'm at the same stage as you but just wanted to let you know that you aren't alone in what you're going through.

It's so upsetting when you know something is wrong with your body and it takes so long to get answers. I've been really fortunate with my GP but I think it also helped that we've been trying to get pregnant for 18 months with no success and I'm 37 so eligible for fertility referral. They found a bleeding cyst on my right ovary on the scan. As great as my GP is, there's nothing else they can do for me and I just have to wait for the first fertility appointment to come through...hopefully only two more months. In the meantime I'm struggling with symptoms and not pregnant. I totally identify with the low mood/irritability you spike about.

If your GP has made the gynaecology referral you could ring the hospital and ask for waiting time estimate. That helped me because although it was long, I had something to focus on.

Good luck with your journey 😊

[Starfish44 in reply to Bluebells86]

hi Bluebell86

Thank you for your reply it means a lot for someone to relate to you and understand your journey and struggles as every person I meet is going through there own battle and have different stories and experiences to tell.

Iam also sorry to hear what you are going through especially trying for a baby and having the symptoms brings hope but also sadness and emotions.

I wish you all the best on your journey and I hope that in time you will have the pregnancy that wish and deserve.

I will follow up with my GP as Iam unsure with hospital I have been referred to.

Keep strong 💪 and don’t give up