Endo and cysts

So, it's no secret from my previous posts i have endo and some areas were left after my last laparoscopy in 2010 due to the areas being small and not worth the risk due to their position. 6 years on I fought to have an ablation as I felt if I could eliminate the horrendous bleeding it might help. I've had a 5cm cyst on my right ovary for around 7months that has caused me pain but not increased so nobody bothered.

In the last month the pain has gone from being a few days into my cycle and a few days at ovulation to constant pain radiating from front to back and through hip and down thigh.... headaches too, feel cold all the time. staying still and pain relief is the only help.... although today even being still isn't a help. I'm not eating very much as I feel bloated and get a lot of indigestion and bowels all over the place. No change in diet.... could it be this bloody cyst? (No pun intended...)

Due to see gynae tomorrow as they were meant to follow me up in January and forgot.... has anyone had anything similar? I have health issues and deal with other pains on a daily basis but really feel now I'm pushing my pain limit. Diazepan was the last drug but only temporary....

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30 Replies

  • Hi Sam, yes I could well be the cyst. Is it a endometrioma?

  • I cant remember exactly what they said last time... I think they said there were some small areas within the cyst that could be blood but not much.... would that sound right? If so could it if got worse? Never been told the type...

  • Not sure could be a hemoragic cyst. Either way it could be the cause of your pain and bowel issues.i would mention all this tomorrow at your appointment. They may decide to remove it.

  • Thanks... I'm hoping they'll take me seriously enough to look. ...

  • Good luck. Let us know how you get on.

  • I've just had a large endometrioma removed and my symptoms before removal were constant pain on that side and radiating down my leg, chronic fatigue, low mood and spotting.

  • All the same symptoms bar the spotting due to the ablation... Can't bleed... I'm hoping at the very least they'll do an ultrasound to check....

  • Yes I hope so! Good luck.

  • Gynae have discharged me. Cyst gone from right ovary. Left not visible. Endo is very tiny and not in a corresponding place to pain. Been advised to go down bowel route or m.e. route.... oh well.... back to floating round the system in huge amounts of pain.... love my life.

  • Hi Sam , were you seen at a BSGE centre or by a general gynaecologist?

  • Seen by Sanjay Vyas at southmead hospital. He heads the endo team apparently....

  • Hi Sam I would get a second opinion. Even a small spot of endo can cause a lot of pain. Pain from endo can travel to other places via nerves. A more experienced surgeon would be able to remove the endo that was left at your last lap.

  • I asked about the endo... he said there was no way it would cause this level of pain. Areas are too small. Not sure I'd trust him now anyway.... lost all faith.

  • It sounds to me like you need a more experienced surgeon

  • I'm really quite miffed. I'm 34 and life is shite. I can't have sex for pain, can't sleep, can't walk far, can't play with kids. I mean what's the point really? (These reasons are not prioritised i might add!)

  • hi sam. i would go back to gp ask for an mri of the pelvis if u havent already had one. i had one only a month or two following a clear lap and low and behold the endometrioma was still there and it also showed adenomyosis and pelvic congestion syndrome. unfortunately you really do have to spell it out to them as to the effect it has on you, your family, and your job etc. im currently waiting for my next lap for excision.

  • I'll ask but won't hold my breath. They look at me like I'm nuts. Also the last laparoscopy was 2 yrs ago... but he's adamant it wouldn't of got worse in that time.... feeling really miserable.

  • i know its hard but if u r still having problems you need to ask them what else they think it could be then. x x

  • Basically M.E. So pain management or IBS..... which I've been down before and resulted in a dairy free wheat free diet. ... not that they've tested me for anything there either. ...

  • Spoke to gp. I have to wait for gynae letter to corroborate what I've said (!).doesn't think MRI would be useful (i can't see how it could hurt). I'll. Be referred back to all other possibilities.

    Ie M.E. spine bowel.... all the while I'm maxed out on drugs and still in pain. Can't afford privately so that's not an option. Really don't see the point in life right now when I literally cannot do anything.

  • UPDATE: So, after a week of agony I went to the Dr as opposed to talking on the phone. After my explanation he said he understood more, felt a second opinion might be worth it and is requesting MRI. RESULT! He examined me and at the right place I nearly lept off the bed... hubby there to witness..... the MRI will definitely be of the pelvis and possibly my hip.... just a case of waiting then.....

  • Hi Sam that's good news. When you get the results ask to be referred to a BSGE centre. Keep us updated.

  • What is a BSGE centre....

  • It's basically an endo specialist centre. They are far better than general gynaecologist

  • Is there one in Bristol do you know?

  • Just looked and Mr vyas heads the accredited one I've been seen at so not sure that'll make a lot of difference

  • Have a look on the BSGE website and you'll be able to find one on there. You can choose who you want to see and then ask to be referred to them.

  • It would just be a different centre with a second opinion as vyas heads the BSGE centre I've been seen at already

  • UPDATE: date for mri is beginning of April. In the meantime I've had full bloods done and have to speak with the gp tomorrow as a couple have come back not ok. Receptionist (not very good) told me my LH serum was 18 and FSH 10.8 when I asked for thyroid results she told me that was what were abnormal but I thought that was tfh? Maybe I heard wrong?

    I'm 34 so are those abnormal with endo and having had an ablation (don't know if that matters)?

  • Hi all

    I am new to this site so sorry if questions are silly.

    What is endometrioma ? is that not endometriosis?

    I have been told I have a cyst in my pelvis which suggests endometrioma and not a malignancy as my CA 125 is only slightly elevated. I had hysterectomy in 1994.

    I am so tired. water works - tube that urine passes out in hurts and is very uncomfortable. Horrible ache in low abdomen. Gets worse if I do not drink plenty of water. Had water infections with blood. Diagnosed with lactose intolerance but can't seem to eat anything at the minute without getting diaorea.

    waiting for appointment to see consultant.

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