Vickysponge357

By a general gynaecologist I think. I hadn’t even met her before so she didn’t know my back story and she made me feel like I was a burden to her all day

MandaBunny

Hi Vicky.

Yes. This sounds like an exact copy of my laparoscopy report, which I had last September. No endometriosis found, yet adhesions to appendix and pelvic wall (just like you), which is "unlikely to be the cause if her pain". Yet that's precisely where my pain is! In fact one of my misdiagnosis was indeed appendicitis! Like you; I have no history of surgery or infections.

This was performed by a general gynea and I was then referred to a bowel surgeon. He ordered a CT scan and nothing was found. Which was extremely reassuring, but I still had no answers.

I then demanded to be referred to an endo specialist centre. The consultant didn't give me her opinion with regards to my laparoscopy results, however she advised to commence Prostap and I had my first injection nearly 2 weeks ago now.

She ill advised any further surgery as yet, given that I only had my other lap last year.

Her mindset is that stopping my cycle for 3 months will give us an idea as to whether the pain IS indeed gynea related (I just know it is as I've been keeping a diary for a year now).

But the initial report confused the hell out of me and made me feel like such a fraud - particular to my managers at work. I struggled in work for most of the year, but just couldn't manage at all. I had to go off sick in September. I'm currently signed off work now until next month.

Let me know how you get on and please don't lie down and put up with it. Push for an endo specialist - as Lindle advised. The initial gynea tried to use the IBS chestnut as a diagnosis. I know it'd not IBS!

Keep in touch and the best of luck.

Amanda xx

Christin_a in reply to MandaBunny

Hey Amanda,

Just wanted to let you know that even if you have pain on the prostap injection it does not mean it's not endo /gynecological. And if it's just being used as a diagnostic tool that's the incorrect use of an intense drug.

Vicky I totally agree with getting referred for a second opinion with a gynecologist with a specialist interest in endo. As Lindle said get copies of your notes too as this can help.

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Vickysponge357

Oh my, given the side effects I’ve seen from ladies on prostap it seems like an odd thing to use from a diagnostic tool!

I’ve been saying to my family that just because she hasn’t reported finding endo doesn’t mean it’s not there, I’ve seen loads of posts from ladies who had endo missed on their first lap because they didn’t know what they were looking for and I think my family are struggling to understand that and it sounds like I’m grasping at straws 😞😞😞

Unfortunately I think lindle is right and that I was put on a general list. I just feel so fobbed off by the hospital that I had previously thought was great!

I’m going to call the hospital records department tomorrow to request my records and then go from there. Im also considering putting in a complaint through pals about how it was all dealt with. My consultant made it so clear that she wanted to go home on time and had said to me several times in the day she wasn’t sure if she would be doing my surgery because I was last on the list, then she didn’t even talk to me after and left terrible notes behind.

Thecraftyadder in reply to Vickysponge357

I just wanted to say my heart broke when I read this. Mine was missed on my first lap 10 years ago by a very unpleasant gynecologist registrar (didn't even get a consultant). I know how much I suffered after because I was told there was nothing wrong. You know what it could be (I didn't know anything about endo at the time) and you have a GP who thinks there is something wrong (mine was fixated on it being ibs so no help to me). You know your body. As hard as it is after this blow follow the good advice from Lindle and find the strength to keep fighting for a proper answer. Sending you hugs x

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Vickysponge357 in reply to Thecraftyadder

I just feel absolutely gutted. When I came round my surgical notes were next to me and I could see the bit that read “several adhesions to pelvic wall - see photos” and I just felt so relieved that they found something. And then the dr didn’t come round and I asked the nurse when I would found out what they found and she picked up the form and skimmed through it saying nope everything is fine, no follow up they didn’t find anything. So I thought maybe I’d mis read it and I told her I was upset that they didn’t find anything and she just looked at me like I was mad. Then when I got back to the ward I spoke to the nurse who’d been looking after me and she read the bit about adhesions out to me and it was her that recommended I get all of my notes

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BendyClare

I recently had a lap for endo removal. It was my first. I also had adhesions. I asked my GYN about it because they were in an unaffected area and I was under the impression, like you, that adhesions were the result of trauma, like surgery and I’d had neither previously. He told me that they can be congenital and that is what he assumes mine were. If you google congenital adhesions you can find out more about it.

Humptydumptyegg

Just wanted to send you lots of support. I think the advice here is great, sounds like you received terrible care so I certainly wouldn’t be accepting of this and seek further opinions. I agree you should also complain, to be treated in this way is not acceptable.

I’m in a similar position to you with suspected adhesions (identified through an US due to ovaries not moving freely) which like you are of unknown cause (no previous pelvic surgery etc) at the moment. GP suspects endometriosis but I’ve had a brief vaginal US and that is all at this stage which showed nothing suspect.

My pain is getting worst and worst though so I feel there must be something else going on. But my first gyny apt is on Thursday, so we’ll see what pans out from there.

Wishing you the best of luck in getting some answers.

Horseyjules

Hi I am the same wanting some more answers as adhesions removed during a total hysterectomy (laparoscopy). My consultant just said didn't really answer me when I asked how they were caused just replied with it could be PID or a previous op ( which I haven't had) so no real answer. I asked about endo and didn't really get a answer. I didn't know you can get your op notes as its left me wondering if this has resolved the pain. I only had the op 4 weeks ago tomorrow so still healing. Please can you keep in touch on how your getting on. Take care xx

Vickysponge357 in reply to Horseyjules

I will do, I’m really hoping getting the notes will help clear things up a bit. It might be worth you looking into getting your notes aswell. It feels horrible knowing that there’s some notes some where with photos and information about what happened but I didn’t get to find out or even ask any questions!

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StefaniaJW

Unless you've had severe infections like chlamydia or gonorrhea or even some minor bacterial infection such as one caused by mycoplasma, adhesions can only come from endometriosis. Have you ever gotten a HSG? If tubes come back clear, your adhesions are most likely not caused by an infection.

I suggest you promptly seek an experienced and well-trained excision surgeon to discuss these things with. I can provide a list of the most skilled and experienced endometriosis excision surgeons working in the UK privately and within the NHS. A general gynaecologist will never be able to perform adhesiolysis

Vickysponge357 in reply to StefaniaJW

I’ve never had any of those infections. My quick google of HSG tells me I’ve not had one, but during my lap they did a dye test in my tubes and her report says that they were all fine.

I’m going to follow Lindles advice to get all of the records sent to me and see what I can piece together with that, once I am armed with some more information I will push to be sent to an endo specialist.

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StefaniaJW in reply to Vickysponge357

If your tubes were fine, it's adhesions from endometriosis 100%. Please seek a surgeon who can perform adhesiolysis. Best of luck

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Vickysponge357

The nurse gave me the number to call to request the notes, I have just contacted them and they are posting the form out to me for me to fill in and send back. I will take everything about being specific on board! In my notes I saw that it said “several adhesions -see photos” so I will make sure I specify colour photos.

The report didn’t say what was done about the adhesions so I’m just assuming she separated them but I don’t know so I won’t hold my breath that she took any samples. Thank you so so much for your advice!

Tarragon83

Some pelvic infections can be asymptomatic for a long time. For example, mycoplasma genitalium and c. trachomatis. I also think that non-sti, regular bacteria can do the same, and it is harder to get rid of those because they often go undetectable. Thats why empirical treatment with broad spectrum abs is recommended in many guidelines in case symptoms remind of PID but no infection can be detected. In Russia, they were looking for chlamydia antibodies in my blood. I guess, its because even pcr on a swab doesn't always pick it up. Has anyone had a history of spending some time in the cold with pelvic pain arising shortly after?

Kat090181

I had this exact situation. Diagnosed with dense adhesions. When i asked my then consultant what caused it, they said previous surgery or crohns, of which i had neither. He just shrugged and said 'Well at least its not endo!'. I'm now going back in for a second laproscopy, as my new my consultant is convinced it's caused by endo. Either way I'm riddled with adhesions again, in a lot of pain. Hope you get sorted x

Kat090181 in reply to Kat090181

Also, my first consultant was a general gynae. I'm now under a consultant who specialises in endo and pelvic congestion, so hoping when I have my next laproscopy, he will be more thorough. I think my firsf consultant went in, saw the adhesions and thought that's the issue, as I wasn't in surgery long (45 mins), despite having adhesyolsis performed, and he only made 2 incisions, rather than the normal 3 (so I'm told).

My second laproscopy is scheduled to take 2 hrs, and I'm doing bowel prep prior so he can go all through the bowel.

Whilst I'm not hoping I have endometriosis, I'm hoping a least they can confirm why I'm in so much pain, so I don't kerp getting discharged back to my GP and having to start all over again! X

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Vickysponge357 in reply to Kat090181

Well all of that sounds very familiar! I was also down for about 45 mins and only have 2 incisions when I was expecting 3. I just feel like they couldn’t have had a good look around in that time! Especially given my bowel and bladder symptoms.

How did you manage to get under an endo specialist?

My worry is that these adhesions formed for a reason so what’s to stop them growing back unless I get a diagnosis for the cause.

Do you have a date for your second lap? I’d be interested to hear your outcome after!

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Kat090181 in reply to Vickysponge357

Hi, I've just had my second laparoscopy, and they found endometriosis, in the same areas as the adhesions found during my previous laparoscopy in 2016! It's been removed, so hoping for some relief.

He did say he would be surprised if it's causing all my pain as it wasn't widespread , so is seeing me in 8 weeks to explore pelvic congestion syndrome, but did say he has ladies that are riddled with endo and no pain, and ladies with less widespread endo in agony, depending which nerves it's bleeding onto.

So relieved to finally have a diagnosis!

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Vickysponge357 in reply to Kat090181

This gives me hope then that I am not crazy! I am pleased you have some answers!! It’s just sad that so many woman have to have multiple laps and be fobbed off multiple times to get their diagnosis.

Since my surgery my pain has not eased and I have some times where it has been much worse. I have seen a colorectal surgeon for a different issue around my bowels and he told me that I had been fobbed off and misdiagnosed by gastroenterologist back in March wo has organised for a camera test, I am going to see if this brings any answers before going back to the gp and pushing for a second opinion with gynea

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Kat090181

Hi hun, I just kept hounding my GP saying I was in pain. They referred me back to gynae, via the community gynae team, and they said I needed to see an endo specialist. My surgery will be before Xmas, but no date as yet xx

MandaBunny

Yes.. me too!

I had a laparoscopy in September 2018.. performed by a general gynea (I'm since wise after the event) and it's report stated "no evidence of endometriosis therefore, no gynaecological cause for pain." However - flimsy adhesions around appendix and back of side wall".

This is precisely where my pain is.. yet noone will give me any explanation!

I've since been under a specialist, who advised Prostap. I've been off work for 3 months!

So far, this treatment is going well. But the adhesions still remain a mystery (like you; I'd had no previous surgery or infections) 🤔

Completely baffled.

Please just continue to fight for answers. I feel like I'm chasing my tale at times.

Hope you find relief (& a diagnosis) soon Vicky. Xx

Vickysponge357 in reply to MandaBunny

Since posting this I had an appointment with colorectal surgery to repair a supposed fissure. At the beginning of the appointment he was asking about what has been going on and when I told him about the surgery and not getting the information he was absolutely disgusted and wanted to know the consultants name and before having our consultation he pulled up my surgical notes from the system and went through them with me! My adhesions were on my sigmoid colon, still none the wiser of why they were there though.

Turned out to be a great appointment though, he confirmed suspicions that I had many months ago that I was wrongfully fobbed off by gastroenterologists at the beginning of the year, they mis diagnosed me and sent me on my way when they should have been doing more tests so he is arranging those for me in the next 2 months!

He is hands down the best consultant I’ve seen yet!

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