Suspected Endometriosis

[littledove97]

Hi everyone. Just looking for support/advice. Not really sure what to do or where to go from here after being told I could possibly have endometriosis…and don’t know if it’s just all in my head 😩

I’m 26, basically in my teenage years I had horrible pain with my periods and they were so heavy. I used to cry in a bath with how sore they were, used to take time off school etc.

I had my daughter at 22.

My symptoms now are:

- 1 week before my period I get headaches that cause dizziness and nausea and I can’t lift my head off the pillow for hours (sometimes the whole day). I have to take time off work every month because of this. It lasts a couple days into my period.

- Pain that radiates down my thighs and to my lower back on my period. (Paracetamol doesn’t help)

- Heavy/long periods

- Stomach bloating

- Weak bladder

- Fatigue

I had an ovarian cyst on my right ovary back in august and it ended up doubling in size.

So, last week I started getting sharp pains in my pelvis on the lower right side. And I could feel a constant ache/pressure.

On Tuesday it got so painful that I went to ER. They had suspicions it was ovarian torsion. They scanned me on an ultrasound but they found nothing.

They diagnosed me with severe ovulation pain. And from what I told them about my symptoms (before I get my period etc) they put me on the progesterone-only contraceptive pill to stop me ovulating and having periods in hopes to settle things down.

They said if it doesn’t settle pain down/stop my periods within 3-6 months then I’ve to see my doctor to get referred back to Gynaecology to get further tests and talk about further options….

They said it could be endometriosis but the only sure way to know is by having laparoscopy surgery. They said they hope to ease my symptoms instead of going down the surgery route to diagnose because of risks etc.

Frustrating that I can’t know for sure…I still have pain in my pelvis after being discharged, they ran blood tests, urine tests, ultrasounds, pelvic exams and swabs, all fine. And no answers 🙁

Just scared in case it’s all in my head, feel like an idiot and just been brushed off my doctors with a contraceptive pill😢

[Jem33]

hi

I’m so sorry you’re going through this it sounds awful for you. My advice would be to go to your GP with a list of all your symptoms and explain how much it is affecting you. Don’t leave it and hope that what has already been said or done is enough you know you’re own body and they only see you for a limited amount of time not everyday so are relying on you expressing all your symptoms and how badly they affect your day to day life.

My symptoms started after my twins were born 11 years ago and I had numerous trips to the GP and was eventually told it must have been nerve damage from when they removed my gall bladder and even wrote on my painkiller prescription “for unexplained abdominal pain” I therefore thought it was all in my head and I must be crazy so I stopped going, stopped complaining.

So now 11/12 years down the line I have been diagnosed with advanced endometriosis, cysts on both ovaries which have pulled them back and adhered to my bowel. One cyst was found on an ultrasound and the endo and other damage was found on an MRI.

Compared to other ladies journeys I’m relatively at the start of mine in terms of treatment etc but I can advise you not to leave it. Listen to your body and if it’s telling you something is wrong don’t ignore it. I just wish I had kept going and maybe my endo wouldn’t be the way it is today.

Sending you hugs and hope you can stay strong.

🤗

[littledove97 in reply to Jem33]

Neurology ward sent me away with the contraceptive pill and told me to see my GP after 3-6 months if it doesn’t help so that I can get referred back to them for further tests 🙄

I don’t think they’ll put me on the wait list for lap surgery until they see how the pill goes 🙁

Im scared if they do the lap surgery and they don’t actually find anything…don’t want to look like an idiot 🙁

Thanks for your helpful/kind comment 💛

[Jem33 in reply to littledove97]

yes sadly they need to give your body time to adjust to any treatment but if it’s not working you should go back and tell them.

I was given the coil and my pain got worse so my treatment option is changing next week and hoping for better results.

I have read that a laparoscopy isn’t always required for diagnosis as they can use ultrasound and MRI but I don’t have enough qualified information to say for sure. I’m sure it’s been mentioned on here before with links to info on diagnosis and treatment options etc.

you won’t be an idiot please try not to think that way I just wish I hadn’t felt the way you are feeling and maybe I wouldn’t be so advanced now.

Stay strong 😊

[Alice96]

Hey

I am so sorry that you are going through this.

I have had a similar experience to you, I suffered with severe period pain, heavy periods, bladder pain and discomfort etc for so long, I was told it may be endo and to take the progesterone only pill for 3 months to see if my symptoms eased and then to go back for a review with prospects of laparoscopy. Unfortunately Covid hit and my review consultation was cancelled. After a year they called me and asked if the pill was working I said yes but didn’t want to be on it forever but they said it was safer than laparoscopy for now. I have kept on pushing for the last year and have now been referred for a laparoscopy but am still waiting for an appointment.

The progesterone only pill completely stopped my periods and eased the other symptoms for a while but for the last 6 months I am back to getting pelvic pain, bad bloating, bladder discomfort, headaches that make me feel nauseous and dizzy and another symptom is itchy skin around the time my period would be due but this may be different for other people.

I am scared to come off the pill now because my symptoms will be 100x worse again and worried my periods may be even heavier as have heard this can happen.

Based on my experience the pill did help for a while so it may be worth a try but I would continue to push to have it looked into more seriously and try and get a laparoscopy.

I hope you feel better and get the answers that you deserve.

Take care xxx