Will it just keep coming back? Bleeding a... - Endometriosis UK

Endometriosis UK

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Will it just keep coming back? Bleeding after arousal.

ellebelle1
ellebelle1

I've had 2 laparoscopys now and I'm only 21. I've been told I have only Stage 1 endometriosis but now 16 months after my second surgery my symptoms are recurring.

It isn't so much the pain, it is no worse than normal period pain, it is the BLEEDING. I bleed once every few days, always after sex or any arousal at all. I just want to wake up one morning without blood in the bed. I can't even exercise without bleeding. I'm on the implant and have been on contraception since I was 16.

I was told by my gynae that the endometriosis is between my bowel and my womb. I can't eat anything without being bloated, my boobs always hurt etc etc.

I'm not sure what to do as I'm going back to the same gynaecologist now for the 3rd time in 3 years, surely I can't just have a laparoscopy every year once it comes back?

Any similar experiences or advice would be really appreciated as I just feel at a loss.

5 Replies
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Have they done an mri of your pelvis to look for adenomyosis? When it comes to pain Endo is usually at fault and bleeding is usually adenomyosis. Don’t give up. There are other ways to control your conditions. I have both Endo and adenomyosis (and fibroids) so I have the mirena and get a month lupron injection. It’s the only thing to not leave me bleeding constantly. I spot occasionally but it’s not bad.

Thank you for replying! No I have never had an MRI of my pelvis, I have never even heard of adenomyosis before so will research it before my meeting with the gynaecologist tomorrow. Thank you I am 100% going to look at other options because it's making my life a misery.

I call it Endo a evil twin sister. It causes me to have a very heavy feeling in my pelvis. It’s basically Endo that forms in the uterine muscle lining. So the only way to remove it is with a hysterectomy. I am not willing to have one at 35 so I am basically put into a state of menopause by the lupron and therefore no periods. It’s glorious lol. If you have a highly trained gynecologist in Endo they will be able to tell with a trans vaginal ultra sound. They can basically tell what the thickness of your uterus is versus what it should be and they can give you a pretty good idea. The only way to 100% know is pathology after a hysterectomy.

I have had an ultrasound but this has never been mentioned, she only really looked at my ovaries. I think I need to go and see specialist for Endo instead, i dont want to have to have laparoscopy after laparoscopy for it to never stop this bleeding.

I've even spoken to 111 once because my bleeding was SO heavy after arousal. The doctor just told me its a side effect of my implant.... but it is fresh blood? And I get period pains with it. Feel like I am just not being listened to.

It’s utterly awful what we have to go through to be listened I’ve been on the pill since I was 16 because of period pain and about 5 years ago I asked my doctor about Endo and she literally laughed and said what would ever make you think you have Endo? So I shut up and ignored it until I started seeing a private doctor because she also missed a concussion for almost a year. I now have 15 chronic conditions (being tested for 1 more). All I can say is you know your body. And don’t take no for an answer.

I highly recommend trying to find a specialist privately who specializes in Endo even for your consult. I am in Canada and I was finally able to get into the Endo clinic last year. It took about 8 months of waiting but it was the most validating experience. Because of how long the Endo was left I had stage 4 recto vagina Endo so bad that my rectum was being pulled up and over because it was attached to my vagina. It took 3 hours for them to remove it. Keep hanging in there and be in your gps face as much as you can. If it doesn’t work look for a new gp.

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