Possible Endo - awaiting tests!

Hi I'm new here and a little nervous about posting as I haven't really shared my experiences before.

I Have been experiencing painful heavy periods with large clots for years along side having bowel and stomach problems (IBS) gallstones, and ulcers! I was put on different methods of the pill when I was younger but this made things worse for me as I had an array of side effects and they didn't really help so I just put up with the pains during my period and the middle of the month. I also had other symptoms such as depression and fatigue which I have had since I was about 18 I am now 29.

About 9 months ago me and my husband started TTC for baby no 1! I went for a prenatal check up and had monthly appointments with my gp due to

Coming off meds which could effect the baby if I conceived! Anyway about 3 months ago I

Mentioned to the GP that my periods had become really irregular and they had gone from 28 Day cycles to up to 50 to as short as 24 days! Also that the pains had become more severe with sever back and lower abdo pain including pain in my hips where they feel they are being ripped apart! I also have been having spotting which was consistent with the painful episodes at different times during my cycle. My GP has requested an ultrasound and blood work and mentioned that with my past history it could be endometriosis! My mother suffered from endometriosis all her life and had a very difficult time conceiving me! I am

So worried and don't know what to expect and what will happen next!?!? My GP has been off on sick leave and annual leave since she has requested the tests so I feel

Pretty much in the dark! Could I ask what I should expect next regarding the tests or what to ask for? Thanks in advance xxx

3 Replies

  • Hi I was diagnosed with endo 3 weeks ago which has a shock for me as I thought I was getting a cyst removed by having a laparoscopy. My dr told me I have stage 5. I have all the symptoms you list. I have been told that the only way to diagnose endo is by having a lap. So although its not nice it something to push for with your gp. If you want to be diagnosed. Although I don't know much about this disease I'm still learning everyday. I do know its passed down through family. I do hope you get the answers you so need. although there's no cure there is pain management medicine.

    Good luck. Xxx

  • Thank you cejay, I'm going to hopefully see my GP next Tuesday! She said she wanted me to have an ultrasound scan first but it is taken forever for an appt to come through! I'm so scared and I'm worried it might be the reason why we are having trouble conceiving! We would literally go through anything to have a baby! My best friend announced to the world that she's 13 weeks pregnant today! So happy for her and is going through a tough pregnancy but it just hurts! I feel like an emotional physical wreck at the moment! I love this forum as it feels like I can realise some of my pent up frustrations! Xx

  • I was only diagnosed three weeks ago too, I waited years before I went to my gp though only two and a half years ago, even though I've had problems for many years I just thought it was 'normal'. I found that from a referral/request from my gp a hosp appointment usually took around 5-8 weeks to come through, this will vary for each area though I would've thought. I had bloods done at gp surgery, ultrasound (transvaginal), I then had a hysteroscopy and also a mirena fitted at same time, I had further ultrasounds, and MRI scan, and biopsies, out of all,those things they found fibroids, cysts, a very large ovarian cyst (suspected chocolate cyst) but no real explanation for my pain' I felt like I was going insane, i also was very overweight so they kept blaming it on my weight and told me to lose weight and eat more fibre and my pain would go :/ I lost 5 and a half stone, my pain did not go away but they finally did my lap and they found severe endo, too much to treat at the time and suggested a hysterectomy inc ovaries, but I am 41 and I have children so this is why they would suggest something so drastic for me, this won't be the case for younger women.

    My head is still spinning though, it's a lot to take in, it was the one bit of news I did not want, but I did want an explanation for my pain, I will have the hyster but only if they will remove the endo at the same time, I'm a bit confused and concerned about going into instant menopause, and the risks of ovaries being removed at my age, and the fact they say hrt is a no no if you have/had endo - I have a consultant appointment tomorrow so am hoping I will find everything out then.

    So that's me lol, stay strong and keep fighting for these appointments so you can get things sorted and keep us updated on how you are doing xx

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