Quick background info: I’ve been under investigations with a gastroenterologist for over a year now. Had a MRI scan, colonoscopy, blood tests, stool tests all resulting in nothing. They suspect IBS. I suspect it’s something more - maybe bowel endometriosis. I have a lot of the symptoms, all of which are worse during my periods. I’m in a lot of pain daily. Shooting pain in the pelvic region, shooting pain up into my bum when trying to have a BM sometimes. I even recently wiped away bloody mucus from my bum when I thought I needed to go for a BM (sorry if too much info).
So now I have a gynaecology appointment on 1st October. I am really scared. I was supposed to have a transvaginal ultrasound over 2 years ago (my sister has PCOS and we have family history of infertility, so I was getting checked for PCOS) and I never received an appointment for it, so I just gave up because I was scared anyway. I get a lot of pain during sex and I can’t tolerate tampons at all. I sometimes get near fainting episodes when trying to use tampons from the pain it causes me. I’m honestly terrified of the consultant doing a vaginal examination or a transvaginal ultrasound. I don’t think I’ll be able to tolerate the pain...
Have any of you had similar experience? Is it common to have a transvaginal ultrasound in relation to endometriosis? Is a diagnostic laparoscopy a last resort after exhausting all options? Did you have a transvaginal ultrasound - what was it like, was it painful, how did you prepare for it? I’m so tired of the pain.
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kiisa
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Hey, really sounds like you’ve been through it with all the tests and back and forth. It does get very tiring and disheartening.
My symptoms were bad lower abdomen pain, shooting pains around my ovaries, very heavy periods, painful periods, bleeding after sex, painful sex & not conceiving.
I had a ultrasound which showed a cyst on my ovaries which they suspected it was an endometromia which I decided to wait and see what happens as it didn’t grow much at all within 2 years.
However we didn’t end up falling pregnant after 3 years, my husband also has issues.
Things moved really fast for me the past few months, I had a ultrasound and the cyst looked suspicious so I had urgent mri and bloods done which came back that it wasn’t anything serious, and it was an endometromia. I had surgery on 9th September to remove it & remove any endo found & also dye test through my tubes. And now I know 100% what it is because of the surgery. It’s such a long road, it has been for me and now I feel like I’m finally getting to where I should be, please don’t stop pushing for answers and don’t be afraid to stand up for what you want, I feel like I was dismissed by doctors at points.
As for the transvaginal ultrasound, I personally didn’t find it painful, more uncomfortable than anything, but again everyone is different. I’m sure you will be ok & I really hope things work out for you.
Thank you so much for your reply. Bless you, sounds like you are going through a hell-ish journey too!
I have a ton more symptoms which a lot of ladies on here with bowel endo have said they suffered/suffer with also, but I didn’t want to write an essay lol.
I would honestly be relieved if I had endo as horrible as it is and as strange as that may sound, it would at least explain everything I feel. I also am not interested in having children and I never have been, so that’s not a worry for me. But, I’m really sorry to hear it took you so long to fall pregnant.
I’m honestly just terrified. I was also recently diagnosed with autism and I’m extremely sensitive to touch - so this is making my anxiety even worse.
It’s just frustrating when drs don’t listen to you or dismiss symptoms that are potential red flags. I’m hoping that it won’t take too long to be seen by an endo specialist, as it’s just general gynae I’m being seen by... I’ve been fobbed off so much with all my GI symptoms, I’m worried they’re going to do the same at gynae and say it’s all in my head 😫 xx
Hey, so sorry to hear you are having such a tough time. It can be such a long and frustrating journey to get the diagnosis you need. I had adhesions/endo in my pouch of Douglas, which caused my rectum to become stretched and tangled. I had deep vaginal pain, which made sex agonising. I was constantly bloated, had terrible constipation and would dread a BM as the pain afterwards was so intense - I would be left with a shooting pain up my bum that could last for hours and would bleed heavily. At times, even sitting down could be painful. Scans are certainly used to help with a diagnosis of endo, but they are not always reliable and a laparoscopy is usually the only way to confirm. I had so many tests, but they all came back negative and it was only when I was finally able to see a endo consultant 6 years later, that they understood what was going on. I had a lap, everything was excised and the pain disappeared instantly. I had many trans vaginal scans over those years and I must admit, they were painful, but manageable. I would take paracetamol maybe 20 mins beforehand and would do a lot of deep breathing throughout. I really hope you get the answers that you need xxx
I haven't had an ultrasound because I find all of those things too painful- I couldn't go through with a smear test last year because it was too much pain!
The only way to officially find out if you have endo is to have a laparoscopy, so an ultrasound won't nessasarily help. With this in mind, if it *is* too much for you, I think it's okay to stop at any point, and ask to go to a endo specialist for a lap instead.
I have all the same symptoms you have, but endo showed up in an MRI scan for me, so it's basically confirmed for me. I wonder as well, if you should show your MRI results to a endo specialist, as they'll know what to look for in comparison to a gastro specialist?
Regards autism, I'm autistic too and totally get how you feel. I suggest looking up 'hospital passport' on the national autistic society and getting one printed it out and give at beginning of appointment- it could be really helpful if you start feeling overwhelmed and so find it hard to explain what you need or stay still in the moment, so doctors are more understanding with you (or this is the case with me!)
It might also be worth talking to your gp and getting some relaxant drugs for the appointment, so that the ultrasound is easier- this is what Ive been advised to take the next time I try a smear, apparently it will make things less painful.
Good luck! Frankly it sounds like you have endo, don't give up and try get an appointment with a different specialist whose an expert in endo!
IBS is the most common misdiagnosis for endo and is nearly always a prior diagnosis when women are finally diagnosed. Effectively IBS is a symptoms of endo in many cases and not a separate condition.
Bowel endo is relatively rare, even in severe cases, and you would usually expect pain with every bowel movement - blood in stools at period time is more common with endo affecting the outside of the bowel such as affecting the uterosacral ligaments which are the most common location for deep endo, especially the left. You might expect lower back and sometimes leg pain with that as pain is referred down the sciatic nerve.
It is hard to believe that you have been under investigation for intestinal issues for over a year and not for suspected endo since you have many of the symptoms. The NICE guideline (link below) says:
1.3.1
Suspect endometriosis in women (including young women aged 17 and under) presenting with 1 or more of the following symptoms or signs:
chronic pelvic pain
period-related pain (dysmenorrhoea) affecting daily activities and quality of life
deep pain during or after sexual intercourse
period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements
period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine
infertility in association with 1 or more of the above.
You already tick most of these and there are other common symptoms not included in this list such as back/leg pain and fatigue. For a more comprehensive list you might find chapter 1 of the ESHRE guideline useful which underpins the NICE guideline (link below).
You do have some symptoms suggestive of deep disease behind the uterus such as pain with sex (especially deep penetration), tampon insertion and shooting pain up the bottom would be typical.
Transvaginal ultrasound is excellent at detecting deep endo but only when undertaken by an expert in gynaecological sonography as a regular ultrasound will usually miss it. So you need to avoid having it with the wrong person. The first thing you really need is a thorough clinical exam to include rectovaginal to feel for any deep nodules. This exam is very good at feeling for them but yes it can be painful. But if you could try and bear it with previous pain meds the feeling of nodules that way would instantly qualify you for referral to a tertiary endo centre and you would then be in the right place for all the investigations and treatment that is well overdue.
When you say you have a gynae appt is it with someone in secondary care with expertise (a special interest ) in endo as that is required by the NICE guideline. You can google their name and see if a profile comes up with special mention of endo and not just under a general list of other conditions.
What I suggest is:
1) Have a really good read of both the NICE and ESHRE guidelines to see what symptoms you identify with and to familiarise yourself with the treatment process that should be applied.
2) Do your best to let them do a rectovaginal exam to feel for nodules. Oftentimes they need to just put fingers in quickly and they will feel them. Just a moment of pain might set you upon the right path for all your life going forward.
3) Be aware that if they do feel nodules you must be referred to a tertiary endo centre. If you are in England this is commissioned by NHS England and not at the local CCG. So the E-referral system doesn't apply. If this is the case be sure they are going to refer you on or your GP can do it.
4) Be sure that an ultrasound will be by an expert in diagnosing endo and not a regular sonographer.
5) If this is a general gynae with no special interest in endo don't let them do a lap. With your symptoms you need expert scans first to look for deep endo and to map your pelvis before anyone does a lap. A lap done by a non endo expert often misses deep endo.
I had a rectal examination done before but it was by a GP and it was EXTREMELY painful, she didn’t say anything about it. I’ve mentioned to a lot of healthcare professionals that I have pain during sex and it’s always been dismissed or not investigated further.
I’ve just googled the consultant I’m seeing and she just seems like a general gynae with no interest or specialism in endo... 😩
But really thank you so much again, I will have a proper read of all these guidelines so I can present a case during my appt with her.
I do have endo around my rectal and pelvic area. But the endo gynae was able to see it on an MRI. He did ask me if I bleed from my anus. Luckily I don’t. But I do get a lot of intestinal issues, cramps and constipation. So the symptoms vary from people to people.
About transvaginal ultrasounds they are not good for endometriosis. I have done loads but that’s because I have endometriosis cysts, fibroids, and polyp. So those are what the ultrasound could pick up. The MRI should be able to pick up endo on you pelvic area. It would be good idea to take it to the gynaecologist. The ultrasound will be able to see cyst and PCOS.
To be honest the vaginal ultrasound may hurt or not depending on the practitioner and yourself or time of the month. But still I find it less painful than a smear. Smear is so painful, but again it depends on the practitioner. But I think they can also see cysts and fibroids in normal ultrasound on your belly.
If the MRI doesn’t show anything than your option is laparoscopy to diagnose endometriosis.
Keep a journal of your symptoms to show the endometriosis specialist or gynaecologist. Take note of pains, moods, all the pms and menstrual symptoms as well.
For example, mines include spotting throughout my cycle, pain after and during sex, constipation, painful tender breasts, horrible mood swings, and lately even nausea.
Try not to worry. I’ve had them before and the doctor has always been very good. I’ve also had a nurse present who checks you are ok so I hope you have the same experience. They completely gel up the device to make it less uncomfortable. If I were you I would explain how uncomfortable you think it may be and they should go slowly and at the end of the day it’s your body you can just stay STOP at any time and leave, there is no pressure it’s your decision. Secondly, a laparoscopy isn’t a last resort it’s the best and correct way to find out if you have endo. You should request one. Best wishes I hope it goes ok. x
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