Laparoscopy-diagnosis

[karooendo]

Hi ladies, I'm new here and I want to ask if anyone had similar experiences with diagnostic laparoscopy, I had this 3 weeks ago, and they found only 3 spots of endo near my ovaries and doctor wrote down : "no active endo found" and they discharged me from hospital , I have been in GP and he said that this symptoms(which is not normal life really) are not connected with this 3 spots and I asked for colonoscopy ... My question is: really can't this connected with my symptoms? I know that is to small etc. But I don't fell that I have anything else besides that, my anus pains like hell, after sex pain, periods nightmare with migraines,constipated all the time,felling that something pulling your intestines down 😭Really??

[Jonesl]

I am sure i read that there is little correlation between symptoms and amount of endo found - i would assume if symptoms such as yours and any endo at all was found that it should be classed as active but i am no dr..!

[Christin_a]

Hello yes as posted before the amount of endo found does not necessarily correlate to the amount of symptoms experienced. So yes a small amount of endometriosis could cause a range of pains and intensities.

I don't know what 'no active endo' is compared to active. My understanding is any endo found can be the cause of symptoms.

[karooendo in reply to Christin_a]

Thank you for response♥️I wrote more under Mparstoy replay 💛

[Mparstoy]

Hi!

I had not heard of inactive Endo before, but I just found something on my doctor's webpage, is not much but it mentions inactive Endo. Hope it can start to give you some light.

centerforendo.com/introduct...

Now, even if there is inactive Endo, how does a doctor make that determination?

I think that is an important question to ask and get a second opinion about, especially because of all the symptoms you exhibit. Asking where the Endo was found could also provide some insight.

For example, if he found it near the rectum, it would explain the pain in the anus. Try to get more information from the surgeon, would be my suggestion.

With kindness

[karooendo in reply to Mparstoy]

Hi thank you for response, I was worry that nobody will answer me... So after laparoscopy the main surgeon told me that " you healthy only 3 spots of endo we found" and she wrote as I wrote before "no activ endo found" ,then I went to GP and he told me that if I don't have "everything stick together inside " is no activ , but when I asked him if it can grow in the next 3/4 years he said : YES! Then my boyfriend read on the website of NHS that if something is no bigger than 3 cm they don't treat it! I have pictures of this (copy) and it's very small like maybye less than cm - it's hard to say on format of picture because it's already in zoom , and it's under my left ovary. I don't know what to do really 😭gp said that he sure that they will discharge me, I didn't received any letter from them but I think the same. If something if less than 3 cm they think that you healthy??? I suffer from this syptoms at 3 years, and 3 years begging for refferals! 😭

[Christin_a in reply to karooendo]

On the NHS you are entitled to a second opinion. In England I know you can specifically ask for this second opinion to be by someone of your choosing. I saw someone suggested bsge centres I second this recommendation. I think the rules are different in Wales, Scotland and Ireland but you should be able yo Google this to check what your rights are in relation to this.

The 3cm thing is incorrect. There's a 4 stages of severity based on size and location of the endo. All of them can be treated by removing the visible endo. I only had a few small spots and they were removed by excision (cutting the endo out). It doesn't make sense to leave it as it grows and as it grows it can cause more symptoms, so the best treatment is removal of what can be seen.

Your gp doesn't sound like they are particularly knowledgeable about endo. Ask at the reception if any of the gps have an interest in gynecology, I have a couple at my practice so I try to see them. They are the ones who finally referred me to get diagnosed after 12 years

[Mparstoy in reply to karooendo]

I agree with the other ladies in terms of searching out a second and expert opinion. A specialist would have removed any Endo they found, no matter the size. Even if you have 3 small spots, perhaps a Stage 1, it could still be causing a lot of pain and problems. I hope you find the medical support you need!

With kindness

[karooendo in reply to Mparstoy]

Thank you very much for time for responding 💛I probably go to poland private or here private because they will probably discharged me from hospital. The question is if i will afford to pay for operation if private... Thanks anyway i wont give up, because of this syptoms - for sure im not "healthy" as they said.

[_EndoWarrior_]

Are you seeing a BSGE Endometriosis Specialist? as they are more experienced in diagnosing stages of Endometriosis and being able to identify Endometriosis due to their advanced training and experience in this area. Not all gynaecologists are educated well enough. I have discovered this from my own personal experience and hearing other Endo sufferers’ experiences with gynaecologists.

Research BSGE Centres nearest to you and join Nancy’s Nook Endometriosis Education Group on Facebook. The group is a closed group and you will have to answer 3 security questions before being accepted. I must emphasise this group is an education group not a support group/forum. You will be told to read materials before being able to like or comment on posts. That’s the same for any new member.

I have learnt so much from this group and feel more empowered in my decisions.

You also have the ‘right to choose’ who treats you through the NHS. I saw two gynaecologists and was not happy with 1st one, the second admitted she was not trained enough to deal with Stage 4 Endometriosis so I suggested a Endometriosis specialist who was a BSGE member and Nook Dr and was referred to them instead.

Hope this is helpful. Good luck. 🙂

[karooendo in reply to _EndoWarrior_]

Thanks i already joined the group, as i wrote to Mparstoy i will go private.. dont have much choise now, wont be waiting for second refferal half a year. Thanks💛

[_EndoWarrior_]

bsge.org.uk/centre/

[_EndoWarrior_]

endometriosis.org/news/supp...

[Holleymuzz]

I had surgery 3 times before they found 3 little spots. Told me it wasn’t the cause of my pain and discharged me. Two years it took to be seen at a specialist centre and 14 months ago an endo specialist did a lap that turned into a 4 hour surgery because it had gone from stage I ( little spots) to stage 4. It’s everywhere in my pelvis and on the walls, severe in my rectovaginal area and I have adenomyosis too. In 11 days I’m having a hysterectomy and more excision surgery, possibly a bowel resection and stoma .

The 3cm is not right. If there is a cyst that’s ‘simple looking’ that’s less then 5cm they will ‘watch and wait’ as they often go away after a few cycles. If it’s a complex cyst (has walls within it or visible that it looks more complex) that is 5cm or less they will ‘watch and wait’ for 6 weeks then go ahead and remove it.

I had a 9cm complex cyst that they were not going to remove until I collapsed in ane, they found it be in fact a cystic tumour.

Please ask to be seen by a specialist endo clinic and soon, don’t wait and feel sorry for yourself as I did. Now I have no quality of life. X

[karooendo in reply to Holleymuzz]

Omg so sorry to hear 💛💛im in shock! The true is that this lap was doing the main Director of ginecology in hospital and she said; you healthy only 2/3 spots of endo found and then I paper : no active endo found. :/ and soooo soooo a lot messages how is wrong...to discharge me St Mary have the centre of endo that's why I had there lap, but how I get there if they discharge me? Go to GP again and beg for it? Even if they give me I probably won't go through to this centre because you not chose doctor through NHS. I must go private I wish you lots of strength and not give up💛💛thank you very much for all this info! ♥️

[Holleymuzz]

Yes you can choose at what centre you want to be treated at. I’m in Brighton and seen by their top gynea consultant. However he still wasn’t an consultant in endometriosis. It like all thumbs are fingers but not all fingers are thumbs. All endometriosis specialist are gynaecologist but not all gynaecologist are endo experts!

I was recommended to Queen Alexandra Hospital in Portsmouth that’s a good 1.5 hours away. But I had the right to a second opinion and I had the right to chose which hospital I was treated at. Trust me, look into it. You can absolutely go to your gp say endometriosis was found, the NICE guidelines on how to approach endometriosis was not met. You want to be seen somewhere else x