Endo in pouch of Douglas symptoms...?

[Flowersandhearts]

Hi everyone

I've not posted for a little while, however I'd really love anyone's thoughts...

My symptoms are:

Bleeding during intercourse

Rectal bleeding during period

Sometimes pain during intercourse (if deep penetration...sorry!)

I had a lap in May that didn't show any endo on my ovaries, Fallopian tubes or the outside of my bowel. Was also due to have hysteroscopy at the same time, however apparently my cervix is too narrow. I've subsequently had 2 internal (IV) scans and 2 ultrasound scans at different times of my cycle to look at my uterus as the lining is thicker than it should be. The thickness varied, and apparently there's no sign of polyps in my uterus.

Because of no endo showing on the outside of my bowel, I've had a sigmoidoscopy to check for endo in my sigmoid colon. And there was none. However....I'm still getting rectal bleeding during my period, albeit it seems less than it was when this all started. I get occasional bleeding during intercourse, which again isn't as much as it used to be.

I was waiting for a follow up appointment following my sigmoidoscopy, however this was 3 months ago and I haven't heard anything!

I don't really want to go back to the same consultant as I think he feels like he's got to a dead end with me. Can I be referred to someone different?

The more I read up, the more it sounds to me like endo in my pouch of Douglas. However, I wasn't clued up as much when I had my lap, so didn't ask my consultant if he'd looked there!

Any advice/ideas? I'd be grateful if anything, no matter how silly you think it may sound. I need to make my next move however I'm just not sure what the best way to get this all sorted is now.

Thanks everyone xx

[Tjb45]

I had a lap in may this had to be aborted after just 20mins as I have a frozen pelvis . My pouch of Douglas was noted on my discharge papers as obliterated! They can’t risk any future surgery as it’s to risky & could leave me with bags should they accidentally pierce my bladder or bowe! It could be very small polops that they can’t detect good luck, I just feel like I’ve been written off really, my only hope is for a easier time when the natural menopause comes along!!!

[Flowersandhearts in reply to Tjb45]

Hiya, thank you so much for replying. I'm so sorry you've had a tricky time with everything. Would it be worth you pushing to see a specialist do you think? I wondered about polyps too!! Hmmm... Good luck with everything xx

[Tjb45 in reply to Flowersandhearts]

I’m seeing a specialist at a BGSE Center of excellence headed up by a professor but when you that damaged it’s now purely about condition management. Surgery has been ruled out following the discovery during the lap, scans & MRI have been completed 6mths of zoladex complete now on a zoladex break as it was hard going on the body but if pain/symptoms return its back on the zoladex with estrogen patches, HRT & calcium supplements to protect my bone density. Bone scans every 12 mths etc bring on the natural menopause 🙏🙏

[Sast]

Don’t know if this helps at all. I have endo in my pod and I get a shooting pain in my bum (tmi lol). I had bleeding with intercourse depending upon cycle. It turned out to be a patch of endo on my cervix, I can’t tell you how many people had looked at my cervix before and not seen it! Although it sounds like you’ve had lots of tests so you’d think they’d have seen it. Anyway, they burnt it off and I haven’t had reoccurrence to date of the bleeding.

Hope someone can help more and you find an answer xx

[Rachie9]

Hi, I had my lap a couple of weeks ago and they found endo in my POD. My symptoms were the same as yours...pain and bleeding on intercourse etc. Did you get seen by a endo specialist when you had your lap?

I changed hospitals for my treatment because after researching after my appointments at my local hospital I found I only had a general gynae, not a specialist. So you should be able to choose where you get treatment too.

Good luck x

[rissy123]

I had it in my port of Douglas too, which is why my doctor put me on zoladex to see if that would help before attempting a surgery in that region. It appears to have worked for the time being. Maybe find a different specialist to discuss with them taking that approach?? I fact, I would hunt out a specialist who comes recommend and understands you!! x

[Bee-74]

Firstly you must be seen at a bsge centre. Endo can be easily missed if not checked by a specialist in this field and completely familiar with the signs. May be worth asking for MRI at one of these centres ? Good luck

[Tjb45 in reply to Bee-74]

I’ve just moved to a BSGE Center in hope that my healthcare will

Be more specific & that the knowledge they have will help rather than a general gynaecologist. You really need to do you research with this kinda illness as it’s can take up to 7-10yrs for a successful diagnosis & treatment plan!! Everyone is an individual & it come in different places in different grades etc so each treatment plan needs to be tried & tested in hope that very soon people suffering can try to live a life pain free!!!! 🙏

[Hidden]

I had endo in the pouch of Douglas.

My symptoms were as follows:

Bleeding and cramping between periods.

Heavy periods till I became anaemic.

Painful periods- 3 times I went to hospital- when I had terrible pain on my lower left side.

Upset stomach on periods.

Severe pain during gynae exams.

Finally chronic unexplained pain on my lower left side prompted my fertility consultant to do a laparoscopy and low and behold found and removed endo.

I went through 6 years of infertility ( still going through it now ) , painful and heavy periods for as long as my periods started, abnormalities in my cycles for 3 years which were left as unexplained, and finally I had to endure 6 months of chronic pain which was dismissed by my gp and no pain killers worked until my endo was treated.

I despair of the medical profession allowing women to suffer 🙄

Some of my symptoms have returned since my miscarriage in July and a ultrasound revealed a uneven uterus lining so I’m also now having a hysteroscopy.

I don’t think you sound at silly at all- you know your body better than anyone.

My gp thought I was putting it on- why I do not know!! Idiot 🙄

It is your right to have a second opinion - I would go back to your gp and push for another referral. I agree with others I think you should see an endo specialist. Some general gynae can miss endo-they are not experts in that field. Particularly if was in POD that Is harder to find- depends where he was looking. I’d get a copy of the report- that is your legal right and go from there.

You should not put up with pain- it is a sign something is not ok. Bodies don’t give us pain for no reason.

Unfortunately us ladies have to fight with medics to get anywhere which isn’t on.

You can do this and we are all behind you ☺️

P.s chase up the hospital for a follow up again sometimes we have to keep on to get heard!

[rissy123 in reply to Hidden]

This is really good!!

[rissy123 in reply to rissy123]

People just don’t understand how it feels and it’s just soooo hard to explain!

[Hidden in reply to rissy123]

And it doesn’t help when you have to fight the medical profession too 🙄

Full sympathy for any women who has endo is crap condition to live with. X

[Hidden]

Oh another thought did the gynae check inside your lining for adenomysis which is like endo but in your lining of your uterus? It can cause lining to be uneven.

That can also cause many problems with your periods. xoxo

[Bdgjdjd in reply to Hidden]

Did ultrasound show fluid on your POD ?

[Hidden in reply to Bdgjdjd]

Yes but I was always told it was “normal “ and part of the cycle ie they said it was caused by ovulation & a good sign?! This was a scanner not a doctor! 🤦🏽‍♀️ sadly ultrasounds aren’t a useful way to diagnose endometriosis. & often won’t detect it unless you have the classic “ chocolate cysts “ which you can only have with endo; I didn’t. A laparoscopy is the most reliable method to diagnose endometriosis xoxo

[Bdgjdjd in reply to Hidden]

I read that endo on POD Cause back pain did you have this symptom?

If you have how can you describe the pain and rate it from one to ten

[Hidden in reply to Bdgjdjd]

I didn’t have back pain but had many other symptoms particularly bowels & pain which id rate a 10. Everyone’s symptoms & pain will differ. xoxo

[Bdgjdjd in reply to Hidden]

Is this pain during period or everyday?

[Hidden in reply to Bdgjdjd]

Between cycles and during my periods. Pain & symptoms are worse during my periods. It’s better since my third lap with an endo specialist this time. Xoxo

[Bdgjdjd in reply to Hidden]

I have it daily

Do you think this the only problem that caused difficulties to get pregnant or miscarriage ?

I just searched i read if you have it on POD it causes infertility more than if it was on ovaries I shocked because my doctor said it the main problems if it was on ovaries and tubes

Btw there is no scape i have it on all of my organs 😂😂 the only place I don’t know about it and I didn’t hear about it is POD but i have all of its symptoms

[Hidden in reply to Bdgjdjd]

For me it was the cause of our infertility & it took 5 years and 10 months of TTC to get discovered! We conceived after it was treated but miscarried & since then I had to have another 2 laps to treat endo 🤦🏽‍♀️

It can affect implantation as it alter the uterus & the endo cells can be harmful to a developing embryo ( it’s the area between the rectum & back of your uterus )

It is is re known to cause much pain & symptoms.

Is your doctor a fertility expert? xoxo

[Bdgjdjd in reply to Hidden]

Yes i have two doctors one it them fertility expert professional

and the other one not expert but he is very good

How you can describe bleeding between cycles you mean ovulation times is it like period blood or small spotting ?

[IB15]

I'm going through this at the moment - do you mind if I ask you how you got on?I hope you are feeling better and got the answers you needed xx

[Flowersandhearts in reply to IB15]

Hi there

I’m sorry to hear you’re having symptoms.

I’m now almost 4 years down the line from this original post and it was interesting to read how things were back then...it’s funny what you forget.

I didn’t get anywhere with the consultant I saw originally. At my follow up appointment he said he couldn’t find any endo, and after a couple of transvaginal scans to look at my uterus for polyps, they found nothing, and they just left me to things and I didn’t hear any further.

Last year when I had my routine smear, I was referred to a gynae as they said my cervix looked red. The gynae confirmed that its scarring from cervical cautery I’ve had twice before and isn’t a problem. He did however find a polyp just inside my cervix which he removed and tested and it was thankfully benign. However I wonder if this was what was causing the bleeding after intercourse.

The rectal bleeding I had actually sorted itself out a few months after my lap in May 2017 and I’ve not had it since.

I’ve since started having IVF (I’m 43 so knocking on a bit) and one of the transvaginal scans found a polyp in my uterus and also a hydrosalpinx which is fluid in one of my fallopian tubes. They don’t know how long they’ve been there, however I’m having an op soon to have them removed. My embryos have been frozen in the meantime.

This is probably way too much information for you, however I thought if I tell you everything, something might help.

My biggest bit of advice would be to (if at all possible) see a private clinic or consultant. Especially with NHS waiting lists the way they are at the moment.

I ended up borrowing some money to do just that...

If you research consultants local to you, you can read up on their expertise. It might be that an appointment isn’t as much as you thought it might be....

All the absolute best with everything, and let me know if there’s anything else you want to know xx

[IB15 in reply to Flowersandhearts]

I'm so grateful to you for replying!

It sounds like you have been through so much, you're very strong. I'm sorry to hear you didn't get much follow up. Great to hear your rectal bleeding stopped after the lap! Did that ease some of the pain for you as well?

That's really interesting about the polyp, it sounds like that could have been the cause, I wish you all the very best with the surgery.

I will look into the private, I appreciate your advice thank you!

I know of women that have had endo and successful pregnancies in their 40's, I wish you all the best with the IVF, if you ever need a chat I'm so happy to talk!

thank you so much for sharing! xx