Lap but no endo found

[MillieA91]

Hey everyone. I had my lap done on Friday but no endo was found ☹ Surgeon told me it was probably just my ibs. I know this is not the case, the pain is so bad and I have all the symptoms of endo so I was surprised when nothing was found. She did say that there was scar tissue in the pouch of Douglas and that this could be old endo. I feel so lost and frustrated now. The pain is horrendous and I know it can't just be ibs. I just wondered whether anyone had been through the same?

[Alaine1 Administrator]

Hi,

I’m due to have a meeting in a short while but I will reply to you later on. Just a quick note that it is possible to have debilitating pain with IBS. Even if endometriosis is found in most cases it is rarely the sole cause of pelvic pain. I have endometriosis but have an additional two pelvic pain conditions that also create debilitating pain. I will reply with a more detailed plan/answer tmw. Take care and rest up 😀

[Abigail16]

Hi Millie, I would just like to say I have been through the same thing, if you want maybe have a read of some of my posts. Long story short, I had a lap in October where no endo was found by a general gynaecologist, went to see a specialist in endo in January he put me in for an urgent lap which I had yesterday where he did find endo

Did the surgeon take biopsies and/or remove the scar tissue in the POD?

Good luck and hope you’re recovering well from your lap x

[Hidden]

My lap in November came back completely clear which was frustrating as like you, I have every single symptom. Since then I've been determined to get to the bottom of whats causing it and have looked into pelvic floor dysfunctions (I knew I already have vaginismus) and found this to be a big source of my pain. Sometimes it's possible that you can just have all the little things that add up to being endo symptoms but arent, which is frustrating. Best you can do is try and rule out things it's not, keeping pain diaries and changing diet etc, and then going back to your doctors with a list of what you've done and what you've found and seeing what they can do for you. Will take time and perseverance but hopefully will be worth it for both of us in the long run! x

[bundista in reply to Hidden]

can pelvic floor dysfunction cause pain in the lower abdomen? I looked it up online and it was unclear whether this was the case or not. I have pretty constant pain just below my pubic bone in the middle of my pelvic as well as back pain..

[Hidden in reply to bundista]

Yeah I was told this was the case and when I started dilating, I found pressure points that hurt all round my back and into my legs when pressed. I guess it's like when you have that spot on your shoulder that needs massaging and it hurts all up your neck into your head and back x

[raywin60]

Hi Millie, I left a message the other day, not sure if it git to you. Might be worth checking if you have coeliacs disease firstly and secondly could be your pudendal nerve, I have both of these conditions and went through a very long journey to get a diagnosis. Also check out the HELP foundation re pudendal nerve. All the best Millie

[Alaine1 Administrator]

Hi Again!

Sorry to hear you are suffering, your pain like many with pelvic pain could be from various sources. Are you experiencing heavy bleeding with your periods? If these are an issue they will need to get the bleeding under control as I know from personal experience bleeding like that alone will make you incredibly miserable - have you tried the mirena or implanon implant? These can also be used to help painful periods whatever the cause is. Tranexmic acid which can slow down the amount of blood lost, birth control pills, provera tablets. You might initially need a combination of treatments to get the bleeding and/or pain to stop. All of these are worth a try as they can easily be removed/stopped if they don't suit you but should ideally all be tried for at least 3 months. Have they carried out blood tests? Thyroid function, clotting screen, hormone levels etc. They rarely reveal anything but it might be something that could easily be treated causing the bleeding.

The bladder is a major generator of pain which is why laps especially when carried out by specialists come back negative for endo or any other gynae problems. The one I'm thinking of is interstitial cystitis (not the same as bacterial cystitis). Often women get flare ups during their periods and if you are having them for 3 months at a time then this could explain at least part of your pain. There are a few ways to test for this the main one being a cystoscopy which looks inside your bladder. No cuts are required- I've had it carried out both awake and as part of a lap for endo and adeno as I suffer from all three. There is a lot that can be done to help with IC or bladder pain syndrome as it's now frequently called. Most people respond to very simple measures to control IC including diet which is completely different to an IBS diet, bladder instillations.

Have you tried mindfulness meditation? It's not a quick fix or will simply make life wonderful but it's a tool that is increasingly being used in medicine to help with illnesses or general pressures of life. I use the headspace app which the endo specialist introduced me to and it does help. Or you can buy a book which has a CD attached. Mindfulness is used a lot for depression - Ruby Wax is a big advocate for it helping her. There are a lot of useful resources online too.

Often pelvic pain requires more than one specialist. I see a gynae whose an endometriosis/pelvic pain specialist and specialist nurse, urologists and specialist urology nurses, pain management and women's health physio and rehabilitation physio and dietitian. So you might need to see 2 or more to help with your pain. Have you seen a clinical psychologist as these often work in pain clinics or can be referred to via the GP as they are very helpful in getting you to manage your pain rather than it managing you, helping if sleep is a problem etc. Sometimes seeing someone who acknowledges you are in pain helps as it doesn't take away your pain but removes the anxiety of not being believed they may even have an idea on who you should see next. It also stops you feeling as though you are a hamster on a wheel going nowhere - hamsters enjoy it but humans rarely do!

Also as someone else mentioned on here it's important to look after you so you might find acupuncture helps or reflexology- sometimes you can get sessions done for free or pay a fraction of the cost if carried out by trainees. It's very easy to stop doing hobbies especially when unwell but it's probably more important to do these. It maybe you can't do what you used to but it's a good opportunity to see what else you'd like to do and who knows where that could take you! Best of luck and let us know how you get on or you can message me privately if you'd prefer. I hope some of this helps and as always you and others can always feel free to contact me. Take care and good luck.

PS I have pinned some of my previous posts that have some useful resources included

[k77a in reply to Alaine1]

Hi I'm new to this group thanks , for your wealth of knowledge. I am a reflexologist btw and I would be happy to do discounted session if anyone is in the cardiff area. I have had heavy period pain and cramps back pain for a long time but was on the pill for 10 years so never felt it as much. Anyway in recent years after a mc 6 years ago, I experience severe stomache pain shooting and dull ache always insomnia before period and during due to pain . Hot water bottle helps a bit but painkillers parecetomol and ibuprofen don't help at all. I had a gyno appointment a few years ago who said I could have a laparoscopy. I was convinced I would get better naturally. Plus the thought of having surgery terrified me! He also suggested contraceptive pill which I didn't want. I used cannabis oil CBD which was the best treatment I have ever experienced . But that's still a taboo with the laws etc. Anyway most recently I skipped a period, I have anxiety and ptss too . Anyway when that period returned It was complete agony, the pain was on the same scale as the mc . And I was tempted to phone 911. I am considering going back to the doc, for the laparoscopy . I know the finding on the gyno was fluid in pouch of douglas and adhesion so that would explain the pain. I am ideally looking for a herbal supplement. Or if I have to use conventional medication one with less side effects. I was also told I have suspected ibs or urethral syndrome.

Thanks

[Alaine1 Administrator in reply to k77a]

Hello,

For your IBS I would definitely recommend the FODMAP diet and sticking to it. I’ve used it myself as I get IBS occasionally. I’ve gradually introduced foods into my diet and can tolerate most foods unlimited most of the time except sweet corn which is a mini Corn on the cob once every 2 weeks and very little dried fruit except occasionally. At the first sign of a flare up I look at at reducing foods such as mango. There are foods that are known to aggravate most people and those that are trial and error. But IBS is common in those with endometriosis and adenomyosis which I have. It’s less certain in interstitial cystitis. I will include a link to the diet. I also don’t eat gluten or dairy as it causes diarrhoea and intense stomach pain. I have over the last 6 months become vegan. I’ve done it gradually over the course of a year as I noticed meat sat heavy on my stomach for days. I’m doing a lot better without. But I’ve done it alongside seeing a dietitian privately which isn’t as expensive as most people think and this is in London. But it’s important to find what works for you and if it means eliminating a lot of foods it’s important to see a dietitian to prevent nutritional deficiencies.

It’s not unusual to skip one or two periods and it’s not usually a cause for concern but it can mean the next period will be heavier than before but will gradually settle down again. You could use the implanon which is very similar to the mirena but is placed in the arm via a very tiny cut. I’ve tried both myself which unfortunately didn’t work for me but many women with painful or heavy periods including those with endometriosis do find it helps them. It won’t work immediately but can take 3-6 months to settle down or start working so you do need to persevere with it. Side effects experienced will depend on the person. I’m on a lot of medication but don’t experience any side effects. Some medications the side effects disappear over time as the body gets used to the drug so again worth persevering with.

A hot water bottle is great and I always have mine to hand especially when at home. I do use it on public transport as I have a small one. At work I use a stick on heat patch. I personally found the ones from the pound shop worked better for me and I place one on my stomach and one on my back. It really helps but doesn’t get rid of the pain completely. I also use a TENS machine on my back which is great for back pain and worth a try.

I often find it’s a case of using a mixture of more natural approaches alongside conventional medicine. Also remembering to look after yourself so maybe painting your nails or giving yourself a facial etc.

I’ve included a link about the FODMAP diet below from Monash University in Australia who do explain it very well. They do also have an app on the iTunes Store I have myself gone round the supermarket with a list on my phone as I’ve gone round the supermarket. It can be a bit less of a headache ordering your groceries online. I often do this myself as I order a lot of fruit and vegetables. The diet isn’t as painful as you may think and there are a lot of good recipes for FODMAPs online.

monashfodmap.com/i-have-ibs...

I would keep an open mind on your cause(s) of pain as most people especially women have more than one cause for their pelvic pain.

Another useful tool I use still is a pain diary. It’s useful especially if an unexpected flare up of pain occurs you can then see what you did/ate and find possible culprits to your pain. Below is an article on keeping a pain diary. You might like to modify the diary according to your needs

verywell.com/should-i-keep-...

I also keep a personal diary where either daily or weekly I write three things I’m grateful for. It can help with anxiety and/or depression but it’s great even if you don’t suffer from these. But the reality is most of us with chronic pain do suffer with these on and off. It doesn’t have to be fantastic expensive things. It’s about finding joy in the small or simple things in life. I have written things such as a tasty almond milk hot chocolate or painting my nails - both inexpensive. Again there are a lot of articles and books out there on mindfulness and gratitude. I have a lot of mindfulness books as I have found it’s helped my mood and I find it very interesting. There is a lot of science to back it up. I also find the books on hygge very interesting as the Scandinavian countries do both of these very well and have found how to include mindfulness and gratitude into their daily lives very well. I hope this helps!

verywell.com/should-i-keep-...

That’s very kind about the reflexology offer. Can you message me privately with the details.