Im just wondering if anyone has had a similar experience as I have as I’m worried about whether I have got endometriosis or not.
Basically- I had been on the depo for 9 months (stopped now should have had my last shot three weeks ago and won’t be getting again). My last shot was done in the February and I have bled lightly (sometimes slightly heavier) since March- no period pain at all. It stopped a week ago as the doctor prescribed tranexamic acid so I could have a pelvic exam by gp. My bloods were tested for thyroid, CA125, pregnancy hormone, full blood count and they all came back with clear and no further action. My pelvic exam was also find internally however there was pain on my right side when she pressed on it my tummy. She said I needed the ultrasound to check more and rule out the possibility of polycystic ovaries and endometriosis as everything else looked fine.
Abit of background on my periods: started my periods when I was 10 and used to have pains during my period and also pain when going to the toilet during my period. However, I was told it was ibs when I was I struggle with constipation/ diarrhoea in general not just during my period. My periods have always been on time and lasted around a week- the only trouble I’ve had with bleeding is since the depo. I haven’t suffered from period pain since I was around 17 (I am now 21).
Today I had my ultrasound and internal. They found a cyst on my right ovary however he said everything looked normal and cysts are normal when a woman is ovulating so could be that. They said my ovaries don’t look polycystic. I asked about endometriosis and how my gp mentioned that it had to be ruled out but he brushed it off and said they couldn’t really tell from the scan and that he couldn’t rule it out for sure but it looked normal. I know a laparoscopy is the only way to determine an answer but the fact he didn’t say much is worrying me. He said my gp will explain in more detail in two days. Should I be worried? Would he be able to tell an endometriosis cyst to a normal one? Has anyone had a similar experience to me? I’m so scared.
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I went on the depo injection last year (bad idea for me 😅) and had an ultrasound scan which found loads of cysts on my ovaries.
I had another one done in January - with a different doctor - and he said they were not cysts, but a back up of eggs that didn't know where to go owing to the fact the injection did not stop me ovulating. I was diagnosed with 'polymorphic ovarian syndrome' but they were unwilling to say whether or not it was pcos or not due as they would need a baseline hormone test and the depo inj would still be in my system for up to a year.
I stopped taking the depo injection last year (think it ran out in January this year?) and I'm now on the combined pill instead (works way better for me) as my doctor said it would stop me ovulating instead.
My ovaries were also horribly painful but this has gotten better since I started the pill and also had. A laparoscopy in March (they found endo then too but no 'cysts' on my ovaries during the surgery).
I'm 25 and have awful diarrhoea on my period too. However my bowel function has improved a lot since my laparoscopy. I still have some ovary pain but it comes and goes and isn't as bad as before. It could take up to a year for me to see the full results so I'm not expecting too much soon 😅
I felt scared when I got my diagnosis too but we are all in this together and I'm definitely not so worried now I know that there is help and treatment out there.
I hope you find answers soon 💕
P. S you are always welcome to pm me if you want to talk/have questions.
Thank you so much for your reply. I’m sorry to hear about your diagnosis but you’re right we are in this together. Nice to know I’m not alone with my worrying ❤️
I had lap in Feb which confirmed endo. I’m still having issues with bowel, pain etc. Had an ultrasound last week to rule out other things. Fibroids have grown a bit, but when I asked if she could see endo inside, she wasn’t sure it would show. I didn’t think it would anyway, but worth asking.
Try not to be scared, have you got a referral to gynaecologist?
I haven’t had a referral yet. My transvaginal results will be tomorrow with my gp but he said everything looked fine on the scan today and that the cyst on my right ovary may just be due to ovulation. However I wasn’t sure whether I’d ovulate yet as it’s only 16 weeks since my last depo shot. Every time I mentioned endometriosis he seemed to brush it off saying he wouldn’t be able to tell anyway!
I’m so worried however trying to stay positive that maybe it isn’t Endo. I guess I’ll know more soon. Hope your symptoms improve over time thank you for sharing with me x
In my case, I have an endometriosis cyst in my ovary. My gynaecologist could tell it was, in fact, endo by just using the ultrasound (transvaginal). The endometriosis cyst is dark brown and opaque, like an old blood, so it is really different from other types of cysts.
The cysts that do not look like this are usually normal and vary along the cycle, as your GP said. I also had a normal cyst when I stopped taking pills some years ago, as a consequence of the hormones varying.
Also, polycystic is a syndrome which means is not only diagnosed by the cysts but a conjunction of symptoms, especially insulin resistance.
That’s what I thought- he said you can usually tell a difference in the type of cysts however others have said they can’t tell through an ultrasound. The docs rang me this morning and my gp is ringing with results and a plan of action at 3.30 today so I guess I’ll know more then.
I know cysts can be common in women that are ovulating however I am apprehensive that I would be ovulating when I had my last depo shot 16 weeks ago- but again everyone is different!
To be honest I’m no doctor so there is no point in me trying to figure it out myself.
One of my clients (My job is beauty) is a gynaecological doctor and she also said cysts could be also created due to fibroids also for those who started their periods young! Just heard so many different stories.
Thanks so much for your response the support on here is great xx
When I had the vaginal ultrasound they could tell that the cysts weren't 'normal' so I was sent for an MRI to rule out cancer. That showed that they weren't tumours, so at that stage I was told that it was probably endometriosis.
I had a transvaginal ultrasound in February and was told I have ovarian varices (basically, varicose veins on my ovaries) My gp has told me that they are not going to anything about these 'at this point' despite my ibs and terribly painful periods. She did however, suggest the mirena coil which I'm going to try but am wary as I had a terrible experience with the coil after my oldest daughter was born 15 yr ago 😔 she seems to think that it may have been the copper coil.
I have been absolutely crippled the last week on my period (which always affects my ibs) my period is always heavy and she has just prescribed me tranexamic acid on Monday, which I couldn't take as I was on day 3 of my period.
I've also been having my bloods done since January and they have always returned with either my ref or white cell count raised.
I don't feel like I'm getting anywhere with any kind of diagnosis or treatment and it's so depressing and frustrating.
I had a similar experience, Last year my pain got progressively worse the longer I stayed off contraception(been on implant/pill for 7-8year). I’m my internal examination was fine apart from when they touched and pressed on my right side of my stomach. Had an ultrasound and it was all clear apart from my slightly heart shaped womb but they said I was born with that so it’s unlikely to cause me problems. So they diagnosed me with IBS. The pain continued to get worse, I felt sick and unwell during ovulation and then the pain got unbearable I was missing work and university. So I went back to GP, told her I think there’s a link with my cycle. I’ve now been finally referred to gynaecology, the consults sending me for another ultrasound to be sure then if all clear I’ll be having a lap surgery to determine if it is Endo hopefully.
Hi yes I was diagnosed from having a transvaginal scan. Because I was already a in patient due to severe pelvic pain my gynaecology was able to give me the results. They found a cyst 20mm and 21mm in my left ovary and a cyst stuck behind my uterus which causing a lot of pain.
My gynaecology delayed my surgery for 11months and I went from stage 3 to stage 4 without even knowing how severe it got to. I referred myself to a bsge center via male gp within 3months I had my surgery, a mri to detect where the endo damage was. You are better off with endk specialist than gynaecology or gp because they know what endo looks like. Ultra scan don't show a lot MRI shows enough to state where the damage is.
It took my years to get my PCOS and endo diagnosis and that only came when my fertility specialist did a lap. Other gynaecologist didn’t pick it up in a lap 6 years earlier!
Personally I’d ask for a second opinion.
On another point I am sick of gynaecologists telling me my pain is from my bowels when I know it isn’t and my bowel issues are worse when my period comes this cannot be coincidental!
A GP told me years ago my bowel problem around my period is probably down to inflammation from the endo in my pelvis but my current gynaecologist just brushed it off! It is infuriating! I’m going to ask my GP for a referral to another consultant when the NHS find some sort of normality.
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