Suspected Endometriosis

[Purple908]

Hi everyone,

(UPDATE)

Thank you all so much for the support I appreciate it ❤️❤️

I had a laparoscopy done In feb with a private specialist.

turns out I don’t have endometriosis. When I had my daughter via a c-section, there was a long tissue that was stuck and hanging causing my pain. My specialist found an unusual area and it was tested but came out negative and it was just a bit of inflammation. (I’ve seen the pics)

3 weeks post op and I’ve never felt so much better!

I have cried so much thinking it was endometriosis and turns out it wasn’t.

I pray for people that have this condition

Please don’t overthink and listen to your own body!

Sending all my love and best wishes to everyone❤️

I just wanted to some advice and anyone’s story regarding endometriosis.

I went to see a private gynaecologist specialist in December and underwent an internal pelvic examination which he stated there was definitely something there.

I had a pelvic MRI done, I was told my bowels have shifted/lowered and I have a lot of fibroids and cysts which is normal. There was also a large grey area which he was unsure if it was endometriosis.

I was put on a contraceptive pill Cerezatte which he stated this would tell me if it was endometriosis which is being used as a diagnostic tool which if it doesn’t work (currently nothings changed being on them) I would need a laparoscopy.

Has anyone had a similar experience?

I’m just worried that it’s not endometriosis and something else.

Any tips/help would be appreciated

[Liseann]

I would hope that at you're next checkup the consultant should go through trying to get a proper diagnosis and if he doesn't, asking him why not. He can't just leave it as "we don't know we think it's Endo but not sure!". That's simply not good enough. Insist on it being investigated. X

[Purple908 in reply to Liseann]

Hi!

Thank you so much for the reply I appreciate it

I’m due to see him at the end of Jan so will definitely try and talk to him more about it.

The pills haven’t worked so I’ll be going through a laparoscopy hopefully finding out if it’s endometriosis or something else.

[Kieraface]

It could well be endo still. If (s)he can’t diagnose from the MRI it maybe that it’s in an earlier stage - I got diagnosed by MRI scan as it was at stage 4.

Contraception can work wonders for some women at controlling endo, but for others, like myself, it doesn’t work sadly. I find the symptoms are easier to manage off medication. Bleeding can be extremely heavy and painful but it’s over a shorter time so I feel that’s more beneficial to my mental health rather than bleeding for months at a time. I would look to see if you could get a lap done. Yes it’s uncomfortable and not ideal but it would give you a clear picture. Also with cysts and fibroids it maybe worthwhile anyway to have those removed as the cysts could potentially be chocolate cysts - characteristic of endo. Good luck x

[Purple908 in reply to Kieraface]

Hi!

Thank you so much for your reply!

I was really hesitant trying the pill as I was on them before and my mental health wasn’t the best on them so your right, I would rather have the heavier periods then my mental health being all over the place.

Thank you! I will definitely bring up the fibroids and cysts on my upcoming appointment

Hope you’re doing ok with stage 4 endo. Always here for a chat xx

[Kieraface in reply to Purple908]

Mine is quite confusing. He saw stage 4 endo on my mri but when he did the excision it was just in one place and pathology came back negative but he swears that it was endo by it’s characteristics so thinks it may have been dormant and only active endo where he burned it off meaning he killed the sample. I have adeno too which is by far the worst part lose clots the size of a my palm and even my fist once or twice. The pain of losing them is excruciating 😣 hope you get answers hun. Here if you wanna pm xx

[TennisCourt]

Hey! Personally birth control slightly “masked” my symptoms for 9 years. I put quotes because yes my periods were not painful, but I bled more than I didn’t. I had problems but it wasn’t until I came off birth control I really noticed.

I shadow Kiera’s thoughts. For me yes, birth control reduced the heaviness and pain of my periods but in return I bled I would 85% of the time and it massively affected my mental health. I’ve been off birth control for about a year and I will never go back on. But I do get traumatic periods every month but it’s 7 days of bleeding and i would take that as the lesser evil.

For me, I was keen to have surgery (my first is tomorrow actually!) simply because I want to know and understand what’s going AND importantly getting some validation for my suffering.

And hopefully with excision it will improve my symptoms.

You said this was a specialist but they dont sound very specialist to me… ? I went private for a consultation and she was a specialist in Endo and she straight up said look next steps are surgery as I think you have Endo, I have never had an MRI.

I would say yes birth control can be used to help but it’s not a solution. You really want surgery, to diagnosis and excise so you can then learn how to manage it from there.

Good luck lovely xx

[Purple908 in reply to TennisCourt]

Hi!

First of all, good luck on your surgery tomorrow! Keep us updated

Thank you so much for the reply! Everyone on here has been so lovely. I was all over the place in December when I had my consultation. I made my self I’ll using doctor google!

I think I’m definitely going to take the advice and come off the pill as I don’t want my mental health being destroyed in the process.

I didn’t want to wait with the NHS so I ended up finding a private endo gynaecologist, he was fab at listening to me but almost as if he was doubting if it was endometriosis. I have most of the symptoms for endo and the pain that I get is excruciating so when I see him again at the end of this month I will definitely request for the laparoscopy because you’re right, would rather know the ins and out of what’s actually bothering me.

Once again good luck with your surgery and thank you again for the reply xx

[TennisCourt in reply to Purple908]

Thanks so much lovely, will do!!

Good luck with everything. You definitely have to do what’s right for you and always self advocate 🙌 xxx

[MichelleFelton74]

I would have thought an MRI would pick it up. I started with ultrasound and internal scan they saw a large cyst had MRI confirmed cyst and diagnosed with stage 4 endo I was getting check for ovarian cancer due to large cyst. I thought MRI’s were the scan to have for this diagnosis. Good luck it’s all new to me. X

[Purple908 in reply to MichelleFelton74]

Hi,

Thank you for your reply!

I’ll talk to the gyno again and see why he can’t determine that it’s endo. Xx

[KTF21]

like a few I was diagnosed from the MRI alone but have stage 4 , I ended up going private due to age / Fertility I saw a gynaecologist who specialises in endometriosis & I think that can make a difference , I would definitely want to confirm that the large grey area is Endo before they try anything else , good luck & hope you get answers soon x

[Purple908 in reply to KTF21]

Hi!

Thank you for your reply

I think that’s what I’ll do when I go back to see him in Jan, awful situation to be in when a specialist is unsure of what it could be before handling any further examination and meds

Hope your ok and managing xx

[Sunset-lady]

Hi, I think it depends on the person who interprets the MRI. If they aren't trained in spotting endo then it can get missed. Ultrasounds are a waste of time in my opinion as they are never conclusive. I agree with everyone, better to know what you're dealing with than be diagnosed with stage 4 at 50 like me xxx

[Purple908 in reply to Sunset-lady]

Hi!

Thank you for your reply

I was informed that the radiologist are doctors themselves so they can identify any problems that have been found on the MRI so unsure as to why he couldn’t be certain that it’s endo. I will definitely chase this though so thank you xx

[Sunset-lady in reply to Purple908]

Your endo may only be at stage 1 or 2 so less likely to spot x

[Avourneen]

It sounds as if your specialist is not great, he should be able to tell if it is endo form the MRI and if your bowels have shifted it could be very advanced endo. I would try a different specialist or at least investigate this docs credentials. If you have a poor surgeon do an excision it may cause your problems for years. He sounds like he can't interpret the scan, this is normal very few gynaes can read scans, but he should have a good radiolgist who can read them properly. It's important as it helps the surgeon plan and carry out the op.

[Purple908 in reply to Avourneen]

Hi!

Thank you for your reply!

I was informed that the radiologist is a doctor so unsure as to why he can’t be certain that it is endo but I will definitely speak to my gyno about this. Thank you xx

[BloomingMarvellous]

Diagnosis, there’s always an element of doubt unless you have an absolute set of indicators that can’t be anything else. Often medics will provide for the open questioning instead of assuming it is … rather than the position of it isn’t it remains as a possibility in play. Diagnosis is frequently about having enough signs and symptoms in a single box. Unfortunately if you say oh it’s definitely X or Y then as humans we naturally try to fit all the other evidence to fit that diagnosis rather than being open to it possibly being Z or even a combo of issues. Endo is notoriously difficult to understand, isolate and to determine close up let alone externally without defining bio markers. Certainty is a complex beast because if you’re wrong then you can deny someone appropriate treatment. Sounds as if they were “approaching with caution without ruling it out “

[Purple908 in reply to BloomingMarvellous]

Hi!

Thank you for your reply

Yes that’s very true, I rather the specialist be absolutely sure before ruling anything out x