Endometriosis or something more? Confused lost and worried.

[Sarahachall2017]

Hi I was just wondering if anyone could help me please. I started getting constant pain around my right hip when I was heavily pregnant. After my sons birth my periods were irregular and the pain still persistent I saw the gp about 6 months after birth. They thought the pain was due to tissue damage or so they say I had an ultrasound which confirmed some damage erosion they said and that was that another few months past and the pain stayed mainly when lifting objects having intercourse and some days even just walking about. My periods completely stopped a year after giving birth I saw a new gp who did a few tests I had a raised ca125 of 136 she sent me for an internal ultrasound which they said they could not clearly see my ovary. Then my doctor referred me to a gynaecologist who immediately ruled endometriosis. I took the hormone replacement medication my periods returned but the pain stays I had another ca125 test which revealed my levels were now only at 74. I was told to repeat tests in 4 months and return to hospital in 7 months. But I still have pain and recently I have become fatter than ever my diet and lifestyle has not changed but I have gained around 2 stone. I also still have concerns because as well as the pain in my lower right abdomen I've notice the area looks abit more bulging than the left side even when laying flat and I've had alot of pain and discomfort in my hip itself when I stretch out my legs to the side and when walking my legs ache almost like numbness. Should I just put this down to endometriosis or could it be something more. I should also mention that around 4 years ago I had emergency surgery for ectopic pregnancy as my tube was about to rupture but they did not remove the tube itself just the pregnancy. Thank you in advance and I do apologise for the long questions.

[BeeWild]

Welcome lovely x if I were you I wouldn’t be waiting 4 months I would be asking for a referral to have a CT scan and maybe a laparoscopy to have a proper look around and take biopsies. Endometriosis can raise CA125 levels but if they couldn’t see your ovary properly I’d want a better scan!

I would go back to your GP and ask for a further referral for better imaging than ultrasound xx

Good luck

Bev

[Sarahachall2017 in reply to BeeWild]

Thank you I had mentioned to my doctor about rhem not seeing my ovary but the report they sent her was that all was fine. But I've gotten worse like I said around the area my ovary sits at is swollen I get alot of pain and discomfort and I don't rhink they have really checked as they just suspected endometriosis by the fact I had pains no periods and my raised ca125 because they didn't think it could be anything else by ultrasound results I feel so frustrated at its been happening since around 7 months pregnant and now my son in 18 months so I've had no clear diagnosis or treatment for 20 months and am still getting nowhere xx

[Purple-iris]

Hi Sarah

So sorry to hear that you’ve had so much ongoing discomfort and pain whilst also looking after a young baby . I think whatever’s going on you need to get some answers as soon as possible and agree with Bev that you need a better scan , either CT or MRI . I’m surprised the previous gynaecologist didn’t request one .

You could ring the Ovacome helpline on Monday and have a chat , they will help you with information on how to get the scans and tests you need to get some answers . If you can’t get them through your current gp or gynaecologist you need to get a second opinion . Definitely don’t wait the the 4 / 7 months before going back , the pain and bloating is your body telling you that somethings not right .

The odds are it’s not Ovarian cancer but it needs to be ruled out .

Sending you a big hug and hope you can get some answers soon .

Love Kim x 💜

[Sarahachall2017 in reply to Purple-iris]

Thank you I will definitely give them a call I've just been kind of battling this alot my partner and family tell me its just my imagination and my doctors and the hospital offer me really answers or support thank you xx

[Jessica-DianeB]

In this situation, and with a lot of hindsight, I’d simply be asking to rule out Ovarian Cancer, given there are no reliable screening tools. It took me 6 months of googling my symptoms for ME to tell the GP I think I have ovarian cancer.

I really hope they can confirm endo with laparoscope and NOT OC. Good luck xxx

[Sarahachall2017]

That's exactly what I have been doing I keep checking then almost second guessing myself thinking maybe I am over reacting by peoples views to the situation hence joining here I saw I wasn't really over reacting judging by how many others have had a long battle and possible misdiagnosed situations thank you I will keep pushing I tend to fret alot when it comes to health so I know I shouldn't really second guess until I have a definite ruling xx

[Coldethyl]

It’s a clever ( or insert another term of choice ) doctor that can diagnose endometriosis without a laparoscopy - without a look inside to confirm anything else is just speculation ! And sadly endometriosis is at root of two subtypes of OC so given all your other symptoms they are being. very remiss not exploring this issue further - you do need to go back to GP and get a referral for a ct scan to check on missing ovary - it probably isn’t cancer but you meed a better check x

[Sarahachall2017 in reply to Coldethyl]

Thank you I thought it was strange too that just by one part scan and a raised ca125 they could diagnose anything my doctor did an internal initially and said she could feel something there that's why the bloods were ordered and she was concerned I had some sort of mass but then on seeing the gynaecologist they just gave me some pills for my period to restart said they would check in after three months and they did or so they say they did I attended the appointment to just be told because my period had returned (yet everything else remained the same) they would see me back in 7 months for further reviews xx

[Hidden]

I think I would return to my gp and ask for referral to gynae oncologist for safety and he or she can order ct scan and do more bloods. If you are that uncomfy better to get it seen to.

[Sarahachall2017 in reply to Hidden]

That k you I have booked in for Tuesday so hopefully they will do something then for me feel like I've waited long enough xx

[Di16]

Can your oncs refer you to a renal specialist? I have had a persistently low magnesium for some time. My normal kidney function tests have been ok, but the oncs are getting concerned about the magnesium levels. They put me on magnesium sachets, 3 a day a few weeks ago. I'm now waiting for the latest blood results. They say if the sachets don't bring the magnesium up enough, they want to refer me to a renal clinic. Di