I had surgery 6 weeks ago to remove 2 large tumours that were found in my pelvis back in September, one that was 13cm from my right ovary and a smaller one on the outside of my uterus along with several chocolate cysts that were on my other ovary - all were removed successfully and thankfully, the ovaries didn't need to be removed as well.
The tumours were detected because my husband and I had been trying for baby number 3 and months were passing by and still no pregnancy along with some other worrying symptoms, so I went to my GP.
Anyway, to cut a long story short - We had the results just before Christmas and thankfully the results were great and the biopsies taken from the two tumours and the surrounding areas were all benign! We had a follow up appointment with my gynecologist to discuss the results and of course one of the main questions was pregnancy! He explained that I should now not experience any problems with conceiving and that the two tumours were endometriomas caused by endometriosis.
I have to return to hospital in February for an ultra sound which is purely just to check if any new cysts are beginning to form, if so then I'll be put on some temporary medication. If none are detected then all is fine and no further treatment will be needed unless the same problems begin again later in the future.
We asked when he would feel it would be safe to begin trying again and he said (and I quote) 'as soon as you want to'.... he said I should wait 6 weeks for the scar to heal (my scar runs from my belly button down to just above my pubic bone) and I then asked if I should wait until the ultrasound in February and he said, no, it's no issue if you're pregnant already.
I explained that during my past pregnancies my tummy gets very big and my concern is the scar tissue and the external scar won't stand the stretching, he basically laughed it off and said it's fine! He said that pregnancy is the best medicine for endometriosis because your ovaries technically go to sleep during the pregnancy so no new cysts will form. He told me my ovaries are the cleanest they've been in years and it's probably the best time to concieve.
So.... I'm just wondering if anyone has been through something similar. I'm so ready to begin trying again, I'm extremely lucky to have two gorgeous boys but we are desperate to bring another baby into our family but I'm so worried, although my gynecologist seemed to think it was fine, I'm anxious that my scar won't stand the stretching.... I have dreaded thoughts it will open.... I'm driving myself mad worrying about it.
I'd love to hear from someone that perhaps got pregnant post surgery and if at all it affected their pregnancies?
Thanks in advance! 😉😉😉
hi can i ask.you apart from not getting pregnant what were your other worrying symptoms??
i think.if the gynae says your safe go for it... good luck xx
Hi,
Yeh sure. I was having terrible pain, on the right side on my lower abdomen which was always at its worst when I was ovulating and after my period had finished my I was also bleeding in between periods, terrible lower back pain again on the right side ... I was also constipated and my periods were very heavy and painful for the first 3 days or so plus I was urinating all the time. Turns out they were all symptoms of the large endometriomas and the chocolate cysts I had. Since surgery they've all disappeared!! It was an awful time though as they are the same symptoms for ovarian cancer, so it was really tough for 13 weeks until the results came back xx
Hello I'm interested in this as I have some of your symptoms.urinating frequently and constipation. could I ask you were your tumour and cysts recognised as endometriomas on ultrasound ? I have had an ultrasound for a prolonged bleed and spotting inbetween periods and this showed up as enlarged ovaries one being with two simple cysts and he other just enlarged with a complex texture.but no one has told me what they could be.were you only diagnosed as having endometriomas after your surgery ? I'm so so glad yours were all found to be nothing as it's just such a worrying time waiting isn't it.i think your Drs advice is solid and I wish you a successful pregnancy good luck Michelle xx
i am in severe pain around ovulation.. and my pelvis is so sore and tender... this xan last 10 to 12 days... my periods have gone down to 2_3 days only but are severely painful... and i am urinating every 2 hours constantly... i have loud tummy noise and am constipated altho i do go...my tummy isnt swollen and is very soft and i am eatting well... so no loss of apetite as i kno thats a big symptom of ovarian cancer... worryin me to death....
Awww I would head to your GP as soon as you can, so you can have peace of mind as your symptoms may well be absolutely noting to worry about but you need to put your mind at rest.
I didn't have any loss of appetite at all, I was eating well too but I did have a swollen tummy, very bloated particularly when my period was due and during.
Don't worry yourself, just get yourself to the docs and sort it. I put mine on hold for a while as I kept brushing it off. Thank goodness I went when I did.
Can I ask how old you are ? I'm 31 by the way. 😉
Hi I had a dermoid cyst removed laparoscopically back in May and fell pregnant shortly after my scars are a lot smaller than yours and they are not causing me any pain. the only discomfort is from my right ovary as the doctors think I have some scar tissue there following the op it's not too painful but I am aware of it but they think the pregnancy is aggravating things but it's completely manageable and I do not need pain killers. I wish you well and fingers crossed you fall pregnant soon x x
Thanks for your reply! That's what I'm worried about it the internal scar tissue and then external scar stretching!
Thanks for the advice. Been googling non stop and I'm getting such a mix of info x
Hi,
No the first ultra sound wasn't able to identify what the two larger masses were. They detected the several chocolate cysts on my ovary but they just couldn't say what the two large ones were. I had internal scans too and they took images which then a team of consultants looked over and they then decided to send me for a CT first... again they couldn't determine what they were and the CT also showed the largest mass was covering my entire left ovary and my bowel so I was then sent for an MRI - again, they still couldn't give me concrete answers as to what they were until they opened me up which is then, after the surgery once the results of the biopsies were back that they told me they were endometriomas. So it was a horrid few months because we knew there could be a chance that the tumours were malignant.
I was assigned to a macmillan nurse too, along with also before the MRI results were in, I had to see a stoma nurse as because the CT revealed the tumour was covering my bowel, they were unsure if it was attached which may possibly results in my bowel having to be interfered with to remove the mass. It was awful. .... thankfully the MRI showed differently which was such a huge relief.
If I'm honest, my self and all my family were convinced I had ovarian cancer. My CA125 levels were in the hundreds, I had pretty much all the symptoms bar the loss of appetite and the whole process just kept getting worse until finally surgery! We were so shocked when the results came back and we were told all were benign! Feeling very lucky.
Good luck to you, what's the next step now for you? Have you been assigned to a gynaecologist? For me... everything went so fast so I hope the same happens for you!
Oh you poor poor thing I'm so very pleased it's all such great news after reading your story I feel your relief 😊😊yes after scan I had a follow up with gyno at hospital on dec 22nd who didn't seem too concerned just said lets do another scan after January period and follow up is feb 9th so I don't understand why it's not urgent as I have an enlarged ovary with heterogenous texture meaning it's not smooth.maybe I've read too much into it on google lol !! The other ovary is enlarged with two simple cysts but that's not a worry.he also said I'm doing this scan to reassure you.but I'm sure I should I be offered the c125 blood test but even my dr said its not necessary.i feel I have a dark cloud hanging over me.did you know the c125 can become very high cos of endometriosis ? That's why yours was so high.did you know you had endometriosis before all this happened to you ? Thank you so much for replying and take care Michelle xx
No I had no idea I had endometriosis before all of this happened. I have two boys and my youngest is 5 so my last scan before all this was almost 6 years ago and nothing was said then so I'm pretty sure the cysts have developed since his birth as surely if they'd seen cysts during his scans they would have mentioned it. I also had no idea that ca125 levels could be high because of endometriosis until once I had my results and I started googling so I did have a glimmer of hope as most threads I read said that ovarian cancer would show levels in the thousands.
I'm surprised you haven't been sent for a ca125 blood test, purely because it can rule out things so early on.... I was sent the following morning after my first doc appointment. So maybe that's a good sign for you, that things aren't moving so urgently? Perhaps you have nothing to worry about....
The waiting around is horrible. It's the worst thing. I'll
Make sure you ring up your gynae clinic to chase up the next scan and/or appointments... make sure you let them know how eager you are for answers and how worried you are, how much it's affecting you... it's such a stressful time. Best advice I can give it try and keep yourself as busy as possible and make sure you have lots of people around you for support when ever you need it. As it was all happening with me around Christmas, once I was signed off work in preparation for the op, I kept busy for shopping and getting everything ready for Xmas incase after the op I wasn't well enough to do anything. Luckily I did as the first 2/3 weeks were tough.
There is no harm in contacting your GP and having an appointment with him/her to discuss what's been happening and how you're feeling, they may be able to shed some light on things for you and also you could ask for the ca125 test?
Good luck and fingers crossed for you that you don't have to wait too long before you get some answers and help x
Yes I will I've already had a go appointment and he said he didn't want to do the ca 125 as I have a fibroid which can cause a false positive as can many others like yourself endometriosis 😊I'm not sure why gyno didn't offer me it either he wasn't concerned just said we will rescan for your reassurance in Akan and see you for follow up in February.i feel slightly better thinking there in no rush but I'm still so anxious about all this.i thought enlarged ovary is something to be concerned about and should be investigated quickly but my gp said heterogenous texture means my ovary is consisting of different things ? it's not smooth he said it could be a endometrioma etc. could I ask were your ovaries enlarged like mine on scan ? Thanks for all your advice and help xxx
Hi Michelle,
No my ovaries were not enlarged as all my cysts and the endometriomas were all outside of my uterus and ovaries....I was told before surgery that I'd need my left ovary removed as one of the masses was attached to it but they managed to save it thankfully.
Not sure what an enlarged ovary means but obviously... your cysts are inside your ovaries am I right? I'm not too clued up on this sorry but speaking from experience, I wouldn't be happy with the lack of urgency and I would push for more information? I understand the reasons for the ca125 test as yes endo can give false results but.... I still feel you need more help and support? So sorry for you that things aren't moving forward much for you.... I can only advise that you lay it on thick and push and push for more help or a second opinion? 😕
Sorry I can't help much. Let me know the latest x
Thank you I have my scan next Wednesday so it's getting nearer.one ovary is enlarged with two simple cysts and the other enlarged but no mention of cysts on report just has a heterogenous texture to it.we will soon find out.i had a 40 min appt with gp who said I could have had This years as I have no symptoms apart from pinching feeling under rib which must be linked.i went to Dr in October as had a 3 week period so he sent me for scan which showed fibroid and enlarged ovaries.but referral took 5 weeks to gyno who was not concerned and just ordered a rescan for next week with a follow up feb 9th.i have to trust them but it just seems a long time to wait.i hope you are feeling better day by day,your story touched my heart as I can feel how anxious you must have been,must have been such an awful time for you.but what a happy ending 😊😊😊😘
Glsd it's only a week away now for your scan and then hopefully you'll have more answers then to stop all this worry you must be going through. The waiting is the worst.
I haven't heard the term heterogenous texture before but I can only assume that things aren't moving so rapidly for you because it's something that can be easily sorted or isn't a worry for the GP'S, gynaecologist? I'm not sure hun.... but I would definitely take it as a good sign to put your mind at rest beacause there is nothing worse than constant worrying 😕
With me, I think from the start, docs and my gynae including my self pretty much thought it was cancer... I'd completely convinced myself and although the fact that everything happened so fast was a good thing. ... it made me worry even more that they were rushing my onto every next step so fast.
The pros know what they are doing hun, they're the best people to help you and they will..... fibroids are very common from what I've read and heard, though they can cause lots of issues the little buggers, they can be sorted and I'm sure the gynae would be pushing for things to happen a lot sooner if he/she was worried.
Try not to worry yourself. ... try not to Google and try to keep yourself busy and remain positive. I know it's hard but the waiting around is the worst and that's when your mind starts to wander...... scan next week - one step closer to sorting everything out for yourself! Xxxx