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Endometriosis UK
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When the pain flares persist with no Endo Found!

After an exploratory 2 hour Lap on 5th November dividing & removing extensive adhesions to be told no endometriosis was seen now off you go, see you - goodbye!

Im so peed off & upset that just like before the lap my pain & various other health issues are still persisting at the same times each month when I’m ovulating and menstruating.

Im disappointed after waiting months for some kind of relief to have it missed & have to go through the whole process again, waiting in pain. We build ourselves up for the lap, only going through with it so we don’t have to deal with this agony any longer. I was & still am terrified of the whole surgery & whats involved.

Ive also noticed additional symptoms relating to Endo which is tooth & gum pain. The last year or so Id repeatedly have tooth ache/swelling. At one point last summer my dentist made a referral to a Maxio-facial surgeon as I kept having symptoms of an infection, appearing as an abscess but nothing showing on X Ray.

The Max surgeon found nothing wrong as the pain & swelling reduced so I just carried on spending a fortune on dental products in an attempt to improve my gum/teeth issues.

Since my lap Ive noticed the pain & gum swelling starts a few days before I’m ovulating. My face is swelled left side & my belly has also flared up again today! The pains exactly as before if not worse! Has anyone ever suffered with dental issues linked with Endo?

Ive kept on at my Gynae’s Secretary & got an appointment end of Feb! I don’t want him going near me again but not sure how to go about getting an appointment with a specialist with no confirmed diagnosis.

Ive refused hormone treatment as Id had the mirena for 15 years & needed to give my body a break. The depression and anxiety I suffered as a side effect was to be honest quite scary. I don’t want hormones thrown at me again.

Why Is this awful disease so difficult to get the right care/treatment for? Its 2019 ffs!!!

Sorry for long post, i feel totally at loss & in agony, again!

Paula xx

25 Replies
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It sounds like a typical general gynecologist approach. Where are the adhesions - what does it say on the discharge note?

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Hi Lindle,

The discharge note states “Adhesiolysis” and thats all!

I was in surgery Two hours, and yep the General Gynae came to me just as I came round telling me I had extensive adhesions and all done now, nothing to worry about.

I have tried & tried getting a Surgery report, asking my GP, phoning his secretary, contacting the Dept of access to medical records, followed by PALS.

Ive been told that no surgery report has been done, only a rough handwritten note by the consultant. His secretary states she cannot interpret this note so has given me the appointment in February to see him personally. Its an absolute joke!

Thanks for replying,

Paula xx

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Who is the surgeon? You can name them on here now. The first thing is to check if they have a special interest in endo.

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I agree. I’ve learned that if the doctor isn’t well trained, they often time miss endo spots. Some endo spots are hidden very well and without the proper training and eye for it, they won’t find it. I recommend adding following Nancy’s Nook Endometriosis Education on Facebook. It talks about this and has a list of doctors internationally that are advanced specialists for endo and getting it out properly. Don’t be discouraged, keep going for answers, if you feel you have it. It’s okay to see different doctors. Just make sure they are skilled in endo, otherwise you’ll be wasting a lot of time.

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The list on Nancy's Nook is based on the opinion of a patient and largely on whether or not she has heard of them! Most of our most excellent excision surgeons aren't on it.

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I believe Nancy places specialists on the list depending on numerous patient feedback. Except for a few that are more remote doctors then she will note that on the list that a patient or two gave feedback. If a specialist is recommended to her, she’d defnitely look into and reach out to them to talk about their approach towards this disease. There are not a lot of doctors on the list for the UK, are there any that you could recommend so she could find out about them and perhaps add to the list to help other people?

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There would be far too many to list. But I have no interest in Nancy and her American group. I run a UK group where we have excellent feedback on many surgeons not on her list and some bad on those on her list.

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Okay I’m glad that people in the UK have a group that they can go to for help and resources. As long as there are advocators for women who have endometriosis, the more hope that there is for doctors to quickly diagnose the disease and get to helping women. What’s your group? I can help spread the word and recommend it to people who are in the UK.

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My group is EndoRevisited UK Endometriosis Support and information group. We have an ever growing extensive info file library with all the many UK guidelines and regulations etc. Women on the other two groups you mentioned are regularly given such incorrect info on the UK system but you won't be able to mention my group on either of them in the same way as we don't allow recommendation of those groups on mine. But if you can message women with the link to our group it would be great to give them access to accurate info. x

facebook.com/groups/1148144...

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Great thank you. I’ll be sure to pass this info along. I read on here a few days ago that someone needed some help but she’s in Scotland and that getting treatment in England was a little more difficult. Hopefully I can find some info to help her. She was looking at BSGE doctors and there’s only 2 listed on BSGE with long long waits. At least a year before she can even get an appointment.

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They don't have NHS Choices in Scotland, but the NICE guidelines and 2016 RCOG standards still apply which require women to have equal access to BSGE centres wherever they are in the UK. The same referral criteria will apply plus the issue of referring out of board if appropriate. There are long waits in England too, but a member on here from Scotland recently joined my group. She had a complex case and I helped her with a letter direct to Prof Horne of the Edinburgh centre and he saw her within a week or so.

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Great! I’ll let her know of Prof Horne. If she’s interested in more information, it’s okay if I pass your info along?

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Yes please pass on the link to our group to as many uk women as possible.

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Hi, Im not on facebook.

Ive heard about a few groups on there but not keen on facebook in general so don’t have access to the Endo groups on there.

Paula xx

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Hi Lindle,

The Gynae/Surgeon interests are listed on the private Bupa website as Infertility, Endometriosis, abilitation and other minor procedures. I assumed that would be ok when I was sent to him via NHS.

When speaking to his secretary after the Surgery though I asked her if he was a specialist in Endometriosis, she said no but he can refer me to one if he thinks I need to be.

I should of asked questions first instead of assuming.

Paula xx

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Yes, general gynaecologists will usually show endo on a list of conditions but this doesn't denote a special interest.

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I wish Id of known that before my surgery.

With a negative Lap & no confirmed diagnosis would I meet the criteria for a specialist? Could you offer any advice as to how Id go about this?

Any info would be appreciated. Im not on facebook so don’t have access to Endo groups.

Thanks,

Paula xx

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When in Feb is your appointment?

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Hi Lindle,

Well Ive had a call from his secretary this morning offering me a cancellation appointment this Friday!Could you advise on how can I push for a specialist?

Im obviously going to tell him my pain & inflammation is still cyclical, getting worse each time. Im also wanting a detailed description of the surgery he carried out.

Any advice would be appreciated.

Thanks,

Paula xx

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It sounds like you are having a horrible time.

I too had a lap and there was no sign of endo but 9 months later an endo specialist told me the latest scan revealed a 6 cm endometrioma on my ovary.

From what I have read on here there seems to be 3 possibilities:

1 you don't have endo

2 the endo went away temporarily

3 the gynecologist missed it

Since you have adhesions, 2 or 3 seems more likely.

I completely emphasize with you. It seems like one step forward and two steps back. When you come out of hospital you have more questions than answers. The worst thing though is when the doctors make you feel as if you are making it up or exaggerating the pain.

The young nurse at the hospital the last time I had tests also had endo. She said that even though she is a medical professional, the doctors dismissed her too. She said the only person who can really understand is another endo sufferer.

As for bleeding gums, do you take ibuprofen by any chance? While I was taking it I had regular nose bleeds and bleeding gums. I stopped taking it after throwing up blood. The nose bleeds have stopped and my gums don't bleed as much now. Could be a coincidence but someone on this forum mentioned a similar experience.

Best of luck

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Wow you were throwing up blood? Could be an ulcer perhaps? And Advil is a blood thinner I think, so it could be why you were getting nosebleeds. How long were you taking it for and what dosage? Im taking it now as well because of the antiinflammatory capabilities. But I’m scared of the side effects.

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I have had bad pain now for 14 years. I have tried lots of different painkillers from the doc but they didn't make much difference, so I bought ibuprofen over the counter. I wasn't even taking it all the time - just when pain got really bad. After I threw up blood, I mentioned it to the consultant and he said that the ibuprofen was the most likely cause. He advised either to take the coated ones, take it along with a tablet to protect the stomach or ask the gp for a different nsaid. I just stopped taking all the painkillers instead and invested in a hot water bottle. Lol

I hope you find something that helps you. It is not much fun being in pain all the time.

Hugs.

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Hi,

Thank you for your reply.

Yes its very frustrating going through the misdiagnosis’s & continuing search for help.

In regards to Ibuprofen and Bleeding gums, I rarely take ibuprofen. Im prescribed Tramadol & Amitrypitine for pain. Last night I did take Naproxen (ibuprofen) as pain was severe. My gums dont bleed, One side gets swollen, causing pain.

Sorry to hear you suffer too. The amount of pain we deal with is horrendous.

Paula xx

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1) Gum inflammation is such a common issue with endo. It's not surprising that you get it right before ovulation, when estrogen peaks, since it is connected to higher levels of hormones.

Since you are choosing not to take birth control, the best way to avoid dental issues associated with high hormonal fluctuations is to take vitex (chasteberry), which naturally helps level hormone levels. It will help with endometriosis as well. Excellent dental care (going to the dentist twice a year for in-depth cleaning and brushing three times a day will help immensely).

Here in Italy we have an amazing mouthwash for mouth sores called Alovex Active Protection: it's jelly-like, soft and aloe vera-based and amazing for inflammed palate, mouth sores and more (you can find it on Amazon UK as well).

2) Since the health of the mouth is related to the bacteria it hosts, a diet for a healthy gut can also be beneficial for dental health: lots of fresh fruit and veggies, freshly caught fish and free-range eggs. Hot meals, refined carbs, processed and fried foods, chocolate, coffee and alcohol are all terrible when it comes to mouth inflammation so please reduce them or cut them out of your diet for a while!

3) As far as your laparoscopy is concerned, endometriosis can present itself just with adhesions. However, I always advise people to seek majorly experienced endo surgeons working in endo centers because deep-infiltrating endometriosis is difficult to recognize and that's why only a REAL expert can help!

Hope this helps (an endo sister with lots of adhesions and mouth sores all the time!)

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Hi

Sorry i had to write to u as u sound exactly like me.

Im 44 and have spent since i was 13 with awful period pains and pain in groin the sex problems.

Then came the weird symtoms ie dislocated jaw, kept spraining or having pain in body, the teeth problem, gums swelling blah blah.

I kind if just put it to i was accident prone.

Then eventually i had 2 laps, nothing!!! A few adhesion but they said if they cut any man or women we would all Have a few adhesions... they were sticking or inflammed and no endo.

Well about 18 month ago i woke one morning and i literally could not move? I was in so much pain in groin and i ended up Ringing a ambulance and was rushed into hosp where again nothing was found but my white blood cells were Always majorly high.

Well to this day i ended up seeing a very good osteo path as i realised there was something wrong in groin and it turned out i had to slipped discs!!!

No reason.

Eventually i found out i have ehlers danlos syndrome... it gives all the symtoms ur talking about. It means our bodies are hypermobile inside and outside and we have extra inflammation in body plus we are hypersensitive....

our organs and joints ligament and muscles give to much so we get internal and external pain....

I wander if this could b u aswell

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