Endometriosis help

[WithAllIntenseAndPurposes]

Anyone with endometriosis here?
I'm having investigations and a laparoscopy end of next month
I'm slap bang in the middle of my cycle and today feel so utterly bloated and sick
Anyone have this?
Thanks in advance

I'm going through diagnosis just now, the pain is so bad before my period I've passed out before now. Actually had a scan today and they can't see anything. So demoralising.

I'm sorry you're going through this it's shit isn't it. When did you realise it wasn't normal?

Had heavy really painful periods since a kid. After my second child had the Mirena and it was fab. No pain no bleeding. Had a section with my third, then a mirena after. Now heaving heavy bleeding immense pain vile bloating nausea excruciating nerve pain in lower back and legs 😓

What sort of scan did you have? My consultant said a scan is okay for detecting very severe endo which causes tethering of organs but laparoscopy is the only definitive way

Hi ladies.

I have endometriosis. It’s normally not seen on a scan so only way to find it is via a laparoscopy. I was diagnosed 3 years ago after years of pain. Vomiting with the pain, feeling faint being crippled in bed.

It’s awful having endometriosis and getting a diagnosis was so very difficult. It took me 11 years to get mine properly diagnosed.

Eating the right foods, exercise and my tens machine have helped enormously and i live a relatively normal life. Having the implant minimised the bleeding as well.

for all those suffering.

I had endometriosis for years then adenomyosis, I class it as a hidden disability ☹️
I didn’t discover Bowen until late on and a monthly treatment gave me some relief- no crawling around on all fours or vomiting. Heat pads front and back used to help too.
💐

I have endo too, diagnosed last year after chronic abdominal pain for 6 months. I’d had painful periods since they started in my teens, finally diagnosed at 36!

I find that probiotics and peppermint tea help with the bloating. Painkillers (prescription!) help with the pain, I used to take mefanmic acid which helped with heavy bleeding but I can’t any more (NSAIDs trigger off my asthma now). I use a moon cup for periods because I find it better, I think I cramp less. Oh and I also use Deep Heat patches when I have to be mobile and a wheat bag when I’m not.

FWIW I only had a couple of small patches of endo but the chronic pain I was in was so bad, I couldn’t work, could barely walk, I was on a variety of painkillers that only dulled the pain. Within 48 hours of my laparoscopy and diathermy although I was a bit post-op sore around my stitches but my abdo pain settled and my periods have been much better.

I am lay in bed with a TENS machine on, I have endo and am on my period. The fucking joy of it.

I know you are not on your period but a menstrual cup is somehow less painful than tampons. I also use reusable pads because for the first 2 days there is no way I can even put a cup or tampon in.

The bloating is awful, it makes me look 5 months pregnant. I have two sons who are in secondary school and they are amazed that my stomach does that over night.

I was finally diagnosed almost 20 years ago aged 26 had scan, just revealed the cysts, then prescribed pure progesterone, when that didn't help I had a chemical menopause at 27 to halt all the oestrogen. Did that for 6 months and finally got a laser lap and dye to confirm diagnosis and sort out the deposits.

Had 2 miracle children and had overhauled my life and diet to give me a better quality of life. The fatigue is worse for me than the pain. I have been a SAHM for 14 years so I can listen to my body and no longer have to push myself through a working day. I am aware not everyone has this choice.

Peppermint tea for the bloating may help you, but just know it is shit and you are not alone. Lots of people just think endo is a painful period. I wish they could see the destructive nature of what it reduces women to.

I am at the same stage of diagnosis as you. I've always had problems, but the couple of years have been hell. Finally got as far as Gynae in November so now waiting for an appointment to say yes please to the laparoscopy. She's put on degestorel for now which has helped a little - pain not flooring me completely and slightly lighter bleeding (but for longer), but unfortunately still having days when the nausea and headache destroys me.
She said they don't like doing more than one laparoscopy now though? Because of the risk of adhesions?
Also how do you all feel about the risk of bowel/ bladder perforation during the op? I must admit it has frightened me!

I had my one and only laparoscopy for treatment and to confirm diagnosis and yes there is a huge risk of adhesion but I needed the endo deposits sorted and for my gynaecologist to tell me what was going on (I was worried about fertility.)

He was able to tell me where the majority of the deposits were and where the scar tissue was. I was also told that although my Fallopian tubes were clear my left ovary was scared to hell and they were unsure it was even producing eggs.

Despite all that I managed to become pregnant almost immediately which although planned was a shock for me and Dh and the gynae!

I had an EMCS with Ds1, not quite a crash section but very rushed and then an ELCS with Ds2 which I chose. Obviously with any surgery there are risks, but I felt weighing everything up the biggest risk to me was the EMCS because it was so rushed. Ds1 is now almost 16.

Oh I should say I cut gluten out of my diet. Was tested for coeliac which came back negative but gluten is definitely a trigger for me but and cutting it out has eased the bloating.

I had a hysterectomy in the end because I felt the benefits outweighed the risks of surgery.
All I wanted was to provide my child with a childhood that wasn’t overshadowed by a mum in regular pain and huge mood swings. I am grateful that it worked for me but it was not an easy decision.

Thanks for all your contributions still feeling really sick and bloated today it really is getting worse by the month so I hope it can get sorted soon

Cramp bark worked for me too- didn’t leave me ‘spaced out’ as buscopan used to.
I’m not linked to Bowen but would definitely recommend it if you are open to alternative therapies.

What is Bowen?

thebowentechnique.com/what-is-the-bowen-technique/
Worked for me to dull the pain and stop the vomiting, as far as I understand it works to relax muscles and can help with adhesions.
I was pretty desperate at the time; analgesia other than paracetamol was ineffective, hormonal therapy did not suit me at all, acupuncture, reflexology no relief ( I can rmbr an acupuncturist confidently giving me a move used in labour - it didn’t work), dietary measures and exercise no relief.
I was going to try Maya Abdominal Massage too - think I couldn’t find a local therapist so chose Bowen instead.
I do hope you find something that works for you, endometriosis is horrendous.