Endometriosis

[ashley2708]

Hi everyone,

I have suffered with extremely painful periods since I was a teenager and I'm now 40. I started taking Cerrelle to ease the pains. This started working after a few months and now the pains have returned 18 months or so later. The pains are horrendous! They start a week before and up to two/three days into my period. I get shooting pains, aches, cramping pains and shooting/throbbing pains in my bum (sorry for the detail). Nothing seems to ease the pain, I take whatever I think will try and help and the pains last all day and sometimes more. They last now for a week and last month I had three separate periods lasting 1 day, 2 days and 1 week.

I'm trying to lose weight however my stomach is often bloated and I have only managed 2-3 pounds despite eating healthy and keeping fit.

I experience pain during sex, I'm not sexually active at present.

I am due to visit my gp again in 2 days, does anyone have any suggestions before the appointment? Thank you in advance.

[Zippy1603]

Sorry to hear about your suffering. I too have suffered for 19 years and only got a laparoscopy 3 weeks ago to investigate and remove endemetriosis. It's terrible in this day and age the only way to check if you have it is by laparoscopy. I too suffered terrible cramps which latterly were excruciating and caused me to pass out. I was also ttc for 2 years which I think is the only reason I managed to get laparoscopy. When visiting GP remember to mention it's affecting your quality of life. I'm guessing you'll be shattered like myself regardless of how much sleep you have had. I found it easier to write things down so that I wouldn't forget anything. If you have a period diary of symptoms then take that too.

[ashley2708 in reply to Zippy1603]

Thank you. I'll do a list to take with symptoms and so on. That'll make the appointment easier. I started the pill when I was in my early teens to help with bad period pain so that will be on my records too.

[Pinkprincess22]

I can really relate to a lot of what you are saying!

I’ve been expecting very heavy periods which started when I changed to cerrelle.

I ended up having a coil fitted and it stopped all the painful... helped the heavy bleeding a bit but periods and the lead up was no longer painful not sure if that will help you or not?

My coil was pushed out by a fibroid so I’ve had to go back to cerrelle and within 4 days the pain started again

I’m waiting to have an operation to remove fibroid and to do something about the endrometrioisis. My issues started over 4 years ago and I’ve fought this year for someone to take me serious re the heavy bleeding and have gone to 3 different consultants before one took me serious... he told me my quality of life should be better so I agree with the other lady that it’s a good angle to go down with your dr.

Good luck!

[ashley2708 in reply to Pinkprincess22]

I dread each month as I know what's going to happen. My periods have started to become so heavy, I don't feel comfortable leaving the house (the awful pain doesn't help with either). I've been on the pill for 2 years now so the gp can't say I've not tried. Gonna start on my list, I know I'll forget things I need to say.

[Pinkprincess22 in reply to ashley2708]

I get that dread!!! My coil come out only just over a week ago and I’m dreading the next period which may me this week!!!

My heavy periods my worst lasted 14 days where I couldn’t leave the house going to the toilet every 2 hours, flooding and after a week I tried to get into see the dr but they did not take me seriously... Day 14 I managed to get to see them and she took only look at me told me I was anaemic and called for an ambulance to take me to hospital... I was pretty unwell!

I did find one pain killer that helped me with the pain... I’ll find the correct spelling for you and post it here.

If your dr doesn’t listen go to see a different one. If you are anything like me you don’t want to rock the boat but I think you have to sometimes! I saw 3 different consultants and they each had a different way of looking at my issues... you’d think they all work the same but they don’t!

Really they should get you referred to a consultant for further tests. Have you had a ultrasound to see if you have any issues like fibroids or cysts or endo?

Have you got private medical insurance? I have via work and when I told the dr I had it they were happy to refer me to a private consultant which gets me off their system then.

Just trying to think of anything else to help...

[Pinkprincess22 in reply to Pinkprincess22]

veganin Is the pain killer you can buy it over the counter it’s a red box about £5 for 40 odd tablets... I always have a box here.

[Pinkprincess22 in reply to Pinkprincess22]

I also have one of these heat pads that plugs into a socket

I find constant heat helps with the pain at times... better than a wheat bag as the heat remains the same and with it being a pad means you can really put it around where it hurts... great for lower back pain which I also suffer with which is all linked I believe!

argos.co.uk/product/3047761

[ashley2708 in reply to Pinkprincess22]

I am glued to my hot water bottle, it really helps. I start uni next month but don't want to be ill when I'm there. I'll have a look thanks.

[ashley2708 in reply to Pinkprincess22]

I'll see if I can get some today in preparation x

[ashley2708 in reply to Pinkprincess22]

I've took Cerrelle and that's it. It eased off after a few months so I've just left it. I missed 4 periods then another 6! I need to go back, for the pain and the number of periods I've head recently. I feel absolutely shattered and lethargic. I need it to end.

[Pinkprincess22 in reply to ashley2708]

Sounds like you might have something else going on inside which is helping all the issues you describe.

Mention to the dr that someone has told you that you sound like your suffering from endro then hopefully that will get her to refer you to a specialist who can start to look at why you are suffering and properly diagnose you.

I wish you lots of luck... be honest with your dr really tell her everything so hopefully will see it’s more than just time of the month issue!

[ashley2708 in reply to Pinkprincess22]

Yeah me too, I was I was going through perimemopause but my doc said I was too young and dismissed it. I need to stick with it and get it sorted soon x

[Natalie-c]

So sorry your going through this it really does sound very much like endo. I had exactly the same symptoms around 6 years ago. The only real way to diagnose it is a laparoscopy. Really push to see a gynae specialist. X

[ashley2708 in reply to Natalie-c]

Yes that's my plan 😊x

[StefaniaJW]

The GP won't be able to help you in anyway unless he/she refers you to a BSGE-certfied EXCISION surgeon or a Nancy Nook surgeon (better option).

Get your hormonal levels checked out (when's the last time you had your thyroid checked out?) + vitamin D levels (the GP can prescribe exams for vitamin D, T3, T4, TSH).

Your endometriosis sounds serious and needs to be tackled through a specialist (there are only a handful in the UK). Please seek specialised help ASAP.

[ashley2708 in reply to StefaniaJW]

Thank you. I had my bloods done last year at some point, I know they checked thyroid but not sure what else. We shouldn't be getting fobbed off from GPS!

[StefaniaJW in reply to ashley2708]

I am sorry but what did you expect? Gynaecologists don't know how to effectively treat endometriosis so clearly GPs know even less. You cannot expect a GP to advise you, they are just unaware and unprepared on the subect matter.

You need to join the Nancy Nook group on Facebook, read the Files, read the "Surgeons International" file and find a specialist and discuss everything with him.

In the meantime, learn about anti-inflammatory diets and more through healendo.com.

The fact that you said "I had my bloods done last year AT SOME POINT, they checked my thyroid but NOT SURE WHAT ELSE" proves me you are even unaware of the tests that were done. You need to get the files out and read what you were tested for or not. It's important to learn these things and keep track of them ourselves to be fully aware of what's going on with our bodies + what options we have and more.

Please contact me if you need any help or information whatsoever

[ashley2708 in reply to StefaniaJW]

What did I expect?!

I am sorry but it was around 12 months ago when I had bloods done and I was being tested for thyroid issues and unsure what else. Im not a medical professional so do not know everything about bloods etc. Gps do and should know about endometriosis and what steps to take; yes some may fob us off which is the same for a variety of other conditions.

I need to start with my gp which what I'll do tomorrow.

I came to this forum for advice and I feel upset with your comments.

[StefaniaJW in reply to ashley2708]

I am so sorry. The "what did you expect" was referred to the GP fobbing you off, not regarding the medical knowledge, which I did not expect you to have. My comment was meant to encourage you to learn about all blood tests, what they mean and so on so that you are concious about what happens to you. I have to disagree on the GP thing, they usually don't even know that ablation is ineffective while excision should be the way to go.

Usually, they refer you to a gyn and that's it and that's not enough in your case. Most GP don't know women with endo should get tested for vitamin D once every couple of years either. So that's why I suggested you get that done if you haven't yet + you research the surgeon yourself on the Nancy Nook group and ask to get referred to the one you choose.

That is your best option. Best of luck!

[ashley2708 in reply to StefaniaJW]

Thank you, yeah I see what you mean i know mine would say that. I'm going in armed with all the information I think I'll need.

[StefaniaJW in reply to ashley2708]

Yes and please do ask me anything if you have any doubts and sorry again!

[Alex9]

Hi Ashley I'm very similar to you, age , symptoms etc. Doctors have been fobbing me off for over 20 years on and off !

Hot water bottle and naproxen works for me . I did have some success with the pill for a long time but it stopped working

One thing that has helped me over the last few months is taking vitamin supplements. I take a multivitam and mineral plus a berocca vitamin c and every other day an iron supplement. I also take 500 mg oil of evening primrose every day. Periods are still heavy and painful but I'm feeling perkier in myself and the pain window has become much shorter. I used to get pain for 2 weeks out of 4 and now it's for just about 5 days.

I hope you have found this helpful

[ashley2708 in reply to Alex9]

Hi Alex, I take other painkillers so I can't take naproxen but I've heard others say they help. I'll try anything that could help. Its amazing how each of us are affected by it.

[ashley2708 in reply to Alex9]

Having bloods done next week and possibly a scan. Had another period, a week early. Can't wait to get it sorted.