Adenomyosis or Endo back??

[HarrietGrace]

Hi everyone,

I had a laparoscopy in 2018 and had mild endometriosis tissue removed from my pelvis, and two cysts removed (one being an endometrioma).

I have started having pain again the last couple of years and have been back to the doctors a few times as I felt I had an ovarian cyst again. However, by the time I get referred for an ultra sound months have gone past and they say they’ve found nothing!… and on goes the cycle!

The last 6 months I’ve began getting horrendous pain again, contraction like pains in my pelvis which is unbearable! And can last up to an hour with intense pain in episodes.. and a dull pain I can only describe as just been kicked in the stomach and makes me feel nauseous the rest of the time. This isn’t constant, I seem to go through flare ups.

sorry for the waffle! The reason I’m not sure what this could be is the last time I went to the doctor they told me my surgical notes said my previous pain was unlikely to be from endo (although this is the first I’ve heard of this!) I had the coil removed after surgery as some pain carried on and this seemed to stop the pain at the time.

The reason I write this post is I got to the point on Thursday night I was in so much pain I nearly passed out and was sweating ridiculous amounts (my partner put a cold towel on me and slowly I came round from being half unconscious). I have been reading on the forum about Adenomyosis and also how this can affect bowels. I’m finding the pain is sometimes linked to bowel movement and also I can feel pain in my ovary and pelvis if pressure is put on my bum (sorry sounds strange!) if I sit down or push just below my tailbone. I find myself forever googling what do symptoms feel like with endo/adeno and just would really appreciate any information or if you may have been through anything similar? Thanks so much and appreciate it xxx

[hellybaybee]

I’m not sure why they say it’s unlikely, endometriosis can come back - I wonder if it’s because you have the coil?… is this pain like it was before the Endo was removed (they can’t remove adenomyosis)? What are they going to do for you to check it out then being as there’s nothing on the scan and you’re still in horrendous pain? Sounds to me like they might be trying to save some money - if I was you, I would go for a second opinion and if it gets bad like this again, go to A&E. sadly, you have to be persistent with endometriosis- it took me 16 years before they sought to remove it. Also, endometriosis won’t show up on a scan so how are they so sure when they have nothing to go on?

[Stoma1]

I had three laparoscopies for endo last one surgeon said endo looks like it’s almost completely gone, but looks like I might have Adenomyosis this was in 2020, I also have ulcerative colitis and all this affected my bowel flare ups, anyway I was put on prostap injections in 2020 following last gynae op and HRT to relieve symptoms of menopause from prostap and it did relieve my symptoms a little. My flares of IC continued and on the 11/12/23 I’ve just had surgery to remove my large colon rectum and they took ovaries out whilst in there so once I’ve fully healed I know I’m going to feel amazing… (the reason they didn’t do full hysterectomy was because of prolapse and I’ve had so much taken out of the area he didn’t think it was wise… if you suspect you have Adenomyosis which in my opinion (although I’m no way a profession) is likely you could request you gynaecologist try’s the prostap or zadex injections for 6months to see if your symptoms are reduced before going down surgery or other bowel related investigations route?

[Starry1977]

Hi, I also actually feel pain in pelvic area, left ovary side when pressure applied to my bum. Plus stomach ache that's relieved when I've been to loo. I had ademenoysis confirmed on a MRI but I also have an obliterated POD and endo near the sigmoid junction, so not sure what causes what. I also have horrible ovulation. Worse than periods

[TammyShrew]

Hello, sorry to hear you're in so much pain again. You need to request an MRI scan. The internal ultrasound cannot show endo on the bowels.

I have it in bowel area but chose not to have further surgery.

I also had coil removed after 2 years as although it worked at first, it then made me feel very heavy, like something was pushing down on womb and lower back, and caused terrible headaches.

I now take the mini pill (Zeletta) which has reduced lots of pain. I get a bit of lower back and sometimes mild womb pain, but nothing that stops me doing anything and no bleeding for quite a few months now (hurrah)!

They really need to investigate what's causing your pain, so ask to be referred to an endo specialist and for MRI. They'll probs refer to gynae at the hospital first but the gynae can refer on to endo spec. (If it's endo also involving bowel, a normal gynae won't be able to operate on it, should you choose further surgery.) It's worth pushing for the endo spec as they'll actually know what they're talking about.

Hope this helps. Good luck. Don't take no for an answer! x