Should I have laparoscopy

[TesP]

For a year I have had irregular bleeding between periods. On 2 occassions I had swabs showing yeast infections, blood test with iron deficiency, a clear internal ultra scan. I have no pain it’s just the bleeding. My dr has now referred me to gynae saying endometriosis is the only thing left to test. I’m really scared to have the surgery and as I only have this one symptom wondering if it’s worth it as it could come back as no? As long as my fertility is OK I can deal with the random bleeding. Is it worth me having fertility tests first? Or even with a positive fertility result can endometriosis still impact this?

[TesP]

Sorry I should add ... I do feel very fatigued constantly, and sometimes have quite an active bowel. And my skin has gotten more prone to spots over the past few years. But of course all of these can be for many reasons and don’t really give me any definitive link to endo ... I can manage all of these things. I’m only 21 so don’t want to conceive yet but I am anxious now they have mentioned endo. I am also thinking about coming off contraception completely and seeing if this stops the bleeding, as I have been on pills for 6 years and think maybe my body just needs a break? Although the doctor down plays the impact of birth control and tells me this wouldn’t be the case ..

[Riverdale1998 in reply to TesP]

Hey lovely.

I have endometriosis. I used to suffer really badly with my periods and had to go on the pill from maybe the age of 13? I’m 22 now so it’s 9 years since I started birth control pills. At the time, I didn’t know I had endo. The pains became noticeable when I turned 19.

Sex was extremely painful for me and I was bleeding between periods and after sex, which wasn’t right for me. I constantly would get a really sharp pain in my abdomen and my groin and it would make me feel so ill.

I was referred to a gynaecologist and it took 9 months just for that referral, bringing us to May 2019. I was told it wasn’t endo because they couldn’t see a black dot on my cervix.

After multiple hospital admissions I was changed to a different gynaecologist and I was due to have my operation in the December 2019. The operation got cancelled and changed 6 times.

I finally had my surgery on 19th August 2020 and I received my diagnosis. They didn’t remove the endometriosis though and I have been a lot worse since surgery because I think the endo has spread.

Having surgery, for me, was one of the best but worst things I have done. It was the best because I got my diagnosis and I knew it wasn’t all in my head but it was the worst because I’m suffering even more now because they haven’t removed what was found.

I have been on rigevidon, cerelle and provera and none of these have stopped my periods, not even in the slightest.

I spoke to my gynaecologist the other day, I didn’t even give him a chance to say anything, I just straight up told him I was coming off all contraceptive pills because I can’t cope on them anymore. They don’t work for me for the bleeding so there’s no point being on them.

If there is any doubt in your mind that you have endo or if you suffer from any of the above symptoms that I’ve spoke about I would get a second opinion. Feel free to message me for more info.

Take care of yourself,

Jade x

[CTDUK]

All I would say is that, if you don’t get the diagnosis, you can’t do anything about it. It may just be intermittent bleeding episodes now but in a few years it could be pain or other symptoms. I had a diagnostic laparoscopy in October and it took just 20 mins with light sedation. I didn’t find it painful at all, the worst bit was that I had to wait 6 weeks to exercise properly again because of risk of hernia from the wound sites.If it’s done on the nhs they often remove what they find at the time of the diagnostic laparoscopy anyway so often it’s done and dusted there and then (as long as the surgeon doing the procedure has the time that day).

After the surgery you can make a plan with your consultant / doctor as to what to do to delay the spread / symptoms of endometriosis (if it is that) - having a diagnosis is often the hardest part of the battle!

Also, if it’s not endo then they might be able to rule other things in / out etc. Ultrasound often doesn’t show anything that is ‘deep’ in the abdomen / bowel etc so it can’t be used for diagnosis of endometriosis, unfortunately laparoscopy is the gold standard for diagnosis and if you’re offered it on the nhs - I’d take it because it could be a game changer for you over the years!!

Good luck

X

[Princesspeach84]

Hi, I would just like to add that I was terrified of surgery also. I was that terrified I knew I had endo but refused to have surgery until pain was unbearable 🙄 I cried non stop for a year waiting for op as I was so worried. When I had the op I was so surprised how easy it all went! I woke up with no pain. There are many horror stories on here and I terrified myself but other people’s stories are unique to them. I’m so glad I had it done. The worst bit was the wind, I was windy for days after but it wasn’t agony just annoying.

[TesP in reply to Princesspeach84]

That’s really good to hear ... the part that scares me the most is being intubated and waking up with it still down there😱 I don’t know why.. I get really queasy about breathing / choking situations, more scared of that then the being under / cut open!

How did you find the scarring from the surgery?

[Princesspeach84 in reply to TesP]

Well I didn’t see no intubation or have a sore throat after. My main concern was waking up with a colostomy bag and it’s the first thing I asked when I came around. But this is very rare I have vaginal recto endo and even the drs thought I would maybe need one but I didn’t! I’m also a huge needlephobe, I’m not going to lie but I’m a baby over hospitals and I was fine and you will be too 😊 my incisions healed a treat and my scars are so tiny 🤞 xx