Probable endometriosis, symptoms but no proof - I'm new here, any advice?

[rosequartz23]

Hi all, in my 20s, had ongoing symptoms of: fatigue affecting everyday tasks and work, erratic heavy periods, light headedness, left sided heavy pelvic pain and tender, abdominal pain, pain on bleeding and intercourse, lower back and top of thigh pain. I have been on pill for over 5 years, cycle always been light, relatively pain free and regular until 6 months ago.

Blood tests, vaginal swabs, vaginal exam, ultrasounds - all normal

Gynae doctor reports probable endometriosis and now advised to take pill for 6 months with no break and monitor. If worsens or no changes, contraception alternatives to be tried or laparoscopy.

Anyone been in a similar situation? any advice?

[Tanyaannh]

I'm in a similar situation myself.

What pill did they tell you to try? I got told to take norethisterone for 6 months, no break and see how i go. I've had to get my gp to tell the gyne i need to be seen sooner than the 6months as my pain is getting worse and affecting my bowels and I'm struggling to walk certain distances.

When i go back, i think the next step was the operation.

[rosequartz23 in reply to Tanyaannh]

Thanks for replying, sorry to hear you're suffering too.

The pill I have is Cilest (combined ethinylestradiol and norgestimate) and only just started the 6 month 'trial' and no break.

I hope it gets sorted for you. They did mention its best to try conservatively first to manage and laparoscopy as a later resort.

[Hope264]

Hi, I think the forum is a good source of information and support too. The only way I am aware of to get a diagnosis for endometriosis is to get a laproscopy. This seems to be more of a drawn out process with lack of diagnosis still going on. I hope your gynae will listen if you want to get checked out with laproscopy. 6 months does seem like a long time to try a pill for.

On your clear test- I had many clear ultrasounds before having large sections of deep infiltrating endometriosis removed from utero sacral ligaments years ago. I have found user 'Lindle' pages of interest to learn more about endometriosis and if your in UK I believe there is relevant info for ladies there too.

Good luck with it

[rosequartz23 in reply to Hope264]

Thank you for your reply. I thought it was a long time too and worry things will be 10x worse when I then do have a break. I suppose I will just have to monitor as it's early days and get back to gynae team if needed. Thanks for your information, hope all is well with you.

[carlysky]

Bless u. I'm in the same position too. But my gynie said if the pain doesn't go away with me taking the pill for 6 months then it is not endometriosis, which then she will put it down to nerve pain. Which baffles me, how can she actually know without considering a laproscopy.

[rosequartz23 in reply to carlysky]

Hi there, thanks for your reply and sorry to here you're suffering. Hmm that's interesting, I would have thought laparoscopy would confirm as this is the only way to diagnose? how long have you tried the pill for? has it helped with pain?

[carlysky in reply to rosequartz23]

I tried microgynon for about a week but I was feeling so sick I literally couldn't bare to take it anymore. So gynie put me on yasmin and I've been on it for just over a month. She seems to think the pill will 100% stop the pain.

[rosequartz23 in reply to carlysky]

I hope it does help with your pain and any other symptoms you may have. Be sure to keep gynae informed though if not. Positive thoughts and take care!

[shazlovesevo in reply to carlysky]

Hey hun,

I was in microgynon for about 2 years before I got diagnosed with endometriosis. I personally think it's utter bullshit what your gynae is saying to you! Try to get a second opinion!xx

[carlysky in reply to shazlovesevo]

Really. Bless. How r u now? How can endo still affect you when your on the pill n having no periods X

[carlysky]

Bless u. Did u have a lap and have it removed? X

[Thereshope]

My story began 20 years ago . Chronic pelvic pain so bad I would be passed out on the floor I had many visits to the hospital and constant doctor appointments. The pain was so severe I thought about ending my life I just couldn't cope . I had a son at 16 and he was the only reason I didn't. I had many years of different meds nothing made a difference. I was at the hospital so often they got fed up and turned me away saying there was nothing they could do other than give me strong pain killers. I got married and decided to try for another child . The pain was unbearable during sex and would often bleed so I was referred to the hospital yet again I was diagnosed with pcos and IBS .. I found this hard to accept . I had a lap which discovered my fallopian tubes were both completely blocked due to fluid leaking from ovarian cysts and I would never have any more children They gave me meds to stop ovulation but they made me I'll and were stopped . The question of endometriosis was raised right from the start but I did not have typical symptoms I didn't bleed heavily my periods were very light and only lasted a day two at the most and they didn't find any when I had my lap. I opted to have my both tubes removed in hope this would ease my suffering. It was meant to be a 30 minute op but I ended up under for over 3 hours....my tubes were practically dead . They found scar tissue everywhere including both ovary. One of my ovaries had become detached and stuck to another organ and I had endometriosis patches everywhere . That's why I have been in so much pain just wish I had been taken more seriously from the beginning it destroyed many years of my life and my hopes of becoming a parent again don't let this be you . I knew something wasn't right trust your gut and don't let them tell you otherwise get referred . I wish you all the luck x