I’m 43 years old and have suffered since the age of 12 with heavy periods, back pain, hip pain, and in excruciating pain when on my period. I’ve lost count of the no of times I’ve been at the GP. I was put on the pill at 13 to help, then the coil, mefenemic acid, tranexamic acid the lot. In 2021 my periods got even worse (if that’s possible) and I went back to GP who referred me for an ultrasound and internal scan to be told there was nothing of concern.
3 years later and it’s even worse. I got to the stage at Christmas I’d had enough. I’m fortunate to have private medical with my employer and had an appointment with their GP end Jan and things have moved pretty quickly.
I’ve seen a private endo consultant and I have a follow up with him on 27/2. To have someone actually validate my symptoms was amazing. We are meeting to discuss next steps which is a laparoscopy & hysteroscopy.
I got another scan this week and been advise I have a 3cm fibroid also.
although I’m pleased things are finally moving I’m not going to lie, I’m a little overwhelmed. I’d expected to be fobbed off again and now all this talk of surgery etc is a bit scary.
I’ve been told I’ll need 2 weeks off work but really looking on what to expect re recovery. Is it painful? What will my first period post op be like?
I feel a bit out of my depth and scared. I’ve not had a general anaesthetic since 18 and with other medical conditions I have (fibro & ME/Chronic Fatigue) I’m stressing myself out that those symptoms will flare up even more and I’ll be really unwell. I’m normally quite a positive person but keep thinking the worst. Probably not helping that this months pain has started and period is imminent!
Any positive experiences welcomed!
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Marnold1980
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I completely understand you. I was diagnosed with stage 4 endometriosis, Adenomyiosis and fibroids on29th of December last year, as soon as I found out about all my issues I became very depressed, overwhelmed and anxious that’s why I decided to talk to my GP and ask for antidepressants. It’s helping me a lot and I’m really glad that I decided to take them.
Thank you. Glad to hear it’s helping you. I’m definitely going to keep an eye on how I’m feeling and will speak to the GP if necessary. It’s just such a lot to get your head round isn’t it? Hope you are doing okay
Hey, so sorry you're going through this! It's good you're finally being listened to and seeing an endo consultant!
I had my first lap in December, I think recovery absolutely depends on the person and what they find/treat during surgery. I woke up from surgery confused and crying cause it was quite overwhelming for me. Once I had come round properly I was fine, back up on my feet and going to the toilet within about half an hour.
The first week of recovery was no more painful than the pain I had been in for months/years prior but i defo wasnt up for doing any work or much around the house. I bled heavily for a couple days. The pain during the first week was mostly due to the gas they fill you with during surgery as it gets trapped in your shoulders (I recommend a heat pack and lots of peppermint tea for this stage, and painkillers to help you sleep and rest up)
The second week was easier but sore to move around too much. My stiches were uncomfortable for a few weeks after cause they took a while to dissolve.
Tbh the main problem I have had since surgery has been mental/hormonal. I got my first period a couple weeks after my lap but it only lasted 2 days because they started me on the depo injection 2 days into my period and it just stopped and I haven't bled since, this is the longest I've gone in a long time without bleeding! But messing around with my hormones and being diagnosed with endo has been A LOT to digest, I thought I was ready because I've been looking into this for so long but getting that confirmation was actually quite hard for me.
I defo recommend trying some guided meditations on YouTube, if you're into that. There's loads of different kinds but I like to listen to healing sleep meditations or release anxiety meditations, it gives your body a proper chance to relax and start healing. I've been doing small amounts of yoga where I can, trying to eat better and be more active when I can.
It has been quite hard to stay positive and I am normally very positive. My advice would be to be gentle with yourself, talk kindly to yourself, talk to others around you so they understand what you're going through and how they can help, speak to others with endo and share experiences and put your health above all else until you're healed.
Sending some healing energy your way, I hope you feel better soon ❤️
Thank you very much for this. I appreciate you taking the time to write it all out. I’ll definitely take your tips on board.
The consultant has spoken to me about inserting a mirena when I’m under but tbh I don’t want to have one again. I had one before and it messed with me so much, I looked pregnant, gained weight and my body kept trying to expel it causing infections. I’ve not been on any hormonal birth control for about 10 years now.
I’m in Scotland so the consultants for endo are few and far between but the one I’m seeing is a BSGE accredited Endometriosis Surgeon and runs a private Endometriosis Centre in Edinburgh (he also lead consultant for the NHS)
I’ve looked into his history etc and know people personally that he’s helped and all seems very positive and that he has a lot of experience. Fingers crossed!
That’s good. It should be an endo specific scan and will look for deep endo behind the uterus. Typically this develops over years and often after being masked by hormonal treatments and pain suppression from a young age. Lower back and leg pain are typical along with painful sex and bowel symptoms. A good question to ask is whether the scan showed rectovaginal endo.
If it did the surgical team will have discussed the plan for your surgery which might involve a bowel and/ or urologist depending on what is found. Recovery varies considerably depending on that also as well as each individual. If it does turn out to be a complex surgery you might need to give a few months to see if you feel the benefit. The first periods can be very painful and surgeons often recommend the pill after to lighten them so you might ask about that and also ask if they use adhesion barriers to try to reduce adhesion formation.
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