My first post: diagnostic laparoscopy didn't find anything but the horrible pain is still there

[Drawing_82]

Hello, this is my first post here and I apologise for how long it is.

I guess I am looking for some hope and advice.

I am feeling really upset today because I had another phone call with my new gp who seems not to listen to me. 

I am forty, I’ve always suffered from bad periods (so did my mum and my sister). 

I tried many options to manage the pain, from the pill to the coil, nothing really helped much. 

In the last few years my period got really bad: not particularly heavy, but the pain was excruciating. I had to take time off every month because I was unable to move and the pain was too bad. No painkillers or hot water bottle would work, the only relief was to pass wind and to have a bowel movement. Sometimes it happened during the night. The pain was really bad on my left side, low back and left leg. 

I had a vaginal scan in February 2021 and nothing was found. In November 2021 I was given the pill Cerazette to stop my period, with the theory that if I didn’t have a period I wouldn’t have had pain. 

The pill messed up with me, it gave me mood swings, in the rare days I wasn’t bleeding I had horrible pain, my IBS got worse and then after over a month I stopped it.

Since then my period had changed, less blood, less pelvic pain, but more back and sharp rectal pain (Checked for hemorroids but nothing). I’d say though that the horrible pain went away.

Then my gp sent me for a gynaecology visit which was only a chat not a visit. The gynae said that my symptoms sounded like endometriosis. 

I finally had a diagnostic laparoscopy and apparently no endometriosis was found. They strongly suggested to have the Mirena coil fitted again. 

Now, I had the laparoscopy on the 16/11, I’ve been spotting since the 26th and bleeding since the 29th. 

What worries me is that the horrible period pain is back in full swing, even worse to be honest, and I still don't know what causes it and I feel it's impossible to have a thorough conversation with my gp.

I spoke to him this morning and I didn’t even have a chance to explain my symptoms, he just stopped me at “I have been bleeding since X day” saying ah yes it’s normal, give it a couple of months. No mention of the horrible period pain. I bursted into tears because I felt dismissed, as often happens.

I feel lost and I don’t know what to do. Any advice is appreciated.

Thank you very much for reading.

[Gothchic]

sorry to hear you have been having a really hard time, was the laparoscopy done by a specialist or a general gynaecologist? Endo can often not be seen by a general.

maybe you could ask to have another scan since your last one was a while ago, or try to speak to a different gp in your surgery as some a more open to listen than others.

I hope you get some help soon, keep trying I know it’s hard but I think the only way to find out what it’s wrong is to keep going back and asking for help. I was seen by many doctors in many departments and had to ask for 2nd options…my endo was actually first seen on an mri done by a spinal doctor as my gp thought my pain was my sciatic nerve and this was three years after the pain started, then I was passed between three gynaecologists before I finally persuaded one to help me. So keep pushing and try to stay strong. Xxx

[Drawing_82 in reply to Gothchic]

Thank you so much for your reply, I really appreciate it. Your experience sounds really hard too. I don't think my laparoscopy was done by a specialist you know?

I think I will ask to see another gp at my surgery and see how that goes. I should have the option through my work to talk to a gp as well, so I'll try that for a second opinion. I also purchased the Ovira machine to see if that helps.

It is really difficult to keep positive but knowing I am not alone it gives me hope.

Thank you kindly again for your message Xxx

[Charliebh12]

Have you looked at pelvic congestion syndrome. Not all gynae recognise it, you need a specialist.

Also endo can be missed by general gynae often. Particularly if it's deep in your bowels.

[Drawing_82 in reply to Charliebh12]

Hi, thank you for your message. I've never heard of that condition, but I am going to look it up now, thank you very much! Yes, I've read many times now that non specialised gynae can often miss endo ☹️

[Circe3]

Hi there, I just stumbled across your post, your symptoms seem very similar to mine. I am 44.

I wondered how you got on with the coil? As it was suggested to me as an alternative to Cerazette. That pill certainly has a lot of different side effects! One being constipation which I never had before.

Can I also recommend Castor Oil wraps on the stomach area… this has really help me when movement is limited in digestive system.

Also fertility massages have worked extremely well to loosen up the whole pelvic area as we will contort when in pain and it affects the muscles and skeletal alignment.

I hope you have found some relief and peace!

[Drawing_82 in reply to Circe3]

Hi there, thank you for your message and thank you for the recommendation about Castor Oil wraps.

Regarding the coil, I am still trying to understand if it's helping or not, apart from the constant spotting/bleeding since they fitted it in November(I was told by my GP that it's pretty normal). I don't think it's helped my period pain much, but I might just need to wait and see.

Thank you again for your message and I hope you are ok!

[Circe3 in reply to Drawing_82]

Thank you for the information regarding the coil! I guess it affects everyone differently, this is the problem. I was told it could cause lots of bleeding at the start which I am not keen on.

I hope it stops the bleeding for you soon 🙏🏻

[Heloo85]

Endo is a progressive disease! In some people in early stages, with mild disease, it does cause cyclic pain! But over the years as the disease progresses, causing more and more inflammation, scar tissue, spreads, distorts organs ect ect the pain very often becomes non cyclic!

You say you’ve had painful periods your whole life, and now they are still painful at 40.

I’m 37, I have Stage 5 with frozen pelvis and adeno, I can tell you painful periods are the least of my worries! I would give anything for a few days pain a month!

My symptoms are weight loss, chronic daily pain, sickness, chronic constipation, pain down both legs, chronic pelvic pain, chronic fatigue!….. If you’ve had active Endo your whole life, undiagnosed, I’d expect you to be similar to me!

So let’s move on to people that say Endo can be missed by general gyneas! All gyneas are general gyneas! They’re actually called Ob-gyneas! Or OBYs in America! Even your ‘specialists’ are! The only difference is, is they are trained further in complex surgeries, not in being able to diagnose Endo better than any other Drs 🤦🏻‍♀️. They also treat Endo no different than ‘general gyneas!’ 🤦🏻‍♀️! Which is surgery or hormone therapy!

Now don’t get me wrong, some Drs will ‘miss’ a patch or two of inactive Endo, because cutting it out, or using ablation can cause an inflammatory response that can trigger adhesions! Adhesions can become life threatening! Leaving some mild disease behind isn’t going to kill you!

People with severe active Endometriosis cannot be missed on Lap! Their organs will be stuck together, distorted, and it won’t be pretty!..

Try the hormones! Surgery can leave you worse off! Xx

[Drawing_82 in reply to Heloo85]

Hey, thank you for your message.

I am sorry for all your symptoms.

I have a GP appointment next week so let's see what they say.

Have a lovely weekend.