Repeated aspirations of endometrioma

Hi - I developed severe endometriosis 26 years ago. I had an initial lap but my gynae said my endo was so bad he just closed me up. I then started to develop endometrioma which the gynae proceeded to aspirate,. This went on for 20 years and they were aspirated at least 20 times.

He retired in 2010 and in 2015 I needed a hysterectomy - my bowel perforated and I'm left with permanent disabling problems . I'm told the repeated aspirations has damaged my insides and this contributed to the perforation. I'm so depressed,. My life is ruined.

Has this happened to anyone else - maybe not the perforation - but the repeated aspirations - I don't understand why he never referred me to someone more specialised or even treated me medically to shut things down for a while. Just wondered if there is anyone else having cysts repeatedly drained? If so beware.

Thanks ladies

4 Replies

  • Hi - I spoke with you previously. You went through such a horrific time.

    Clearly to repeatedly drain endometriomas is only going to keep them growing but did you finally have your ovaries removed when you had the hysterectomy? Apart from the bowel problems do you have symptoms that you think are still endo?

  • Hello Lindle, yes I'm sorry I found my earlier post after!

    I'm still having problems, but not with endo. The thing was my endo problems eased considerably 6 years ago when I hit the menopause. It was onky because of the unreliability of scans etc and the presence of a cyst with solid elements, that a hysterectomy was performed. The hysterectomy was a success but a part of my small bowel was so stuck the area of the aspirations, it nearly killed me, I lost a lot of blood, they closed me up and two days later all my bowel contents flooded out of my vsgina. Twenty months later I'm still having problems - I have abdominal fistula - 3 holes on my scar that are faecal fistula. They are horrific and I have to wear stoma bags. I can no longer have intimacy or even a bath and I am really depressed. Ironically have put on weight, onky a small part of my bowel is damaged but I can onky eat low residue foods. When this happened I was fed through my central vein and became so worried about not being able to eat. I'm now nervous of food and tend to stick to protein based snacks, plus cake!

    I just wondered how common his method of dealing with my cysts was - it seems excision is the best treatment but of course my repeated aspirations were mainly for the period 1996 to 2010 when maybe this was the done thing .

    I'm not sure I wil ever heal, more surgery has been suggested but everyone is cautious and putting me off a bit as if could make things worse.

    To answer your question sorry I did have my ovaries removed but I understand from other websites that if any endo remains it can generate it's own oestrogen which is quite depressing too, the gynae who operated assured me there was NO evidence of any active endo,

    Sorry if I'm repeating myself, some days the depression just hits he hard.

  • Yes, you are right in that you will have been treated in the earlier days by general gynaecologists working to what will have been pretty unclear guidelines. But the centres have been in existence since 2008 and published on the BSGE website since 2009 so for severe endo you should have been referred then. You say you needed a hysterectomy in 2015 but what was that for - to get rid of the damaged ovaries?

  • Well the repeated aspirations and severe endo had left serious scar tissue, but everything I was having an ultrasound, ovarian cancer was suspected as the ovaries had cysts with solid elements. They just felt to safer to remove everything as they didn't know what the cysts were and wouldn't biopsy incase they were potentially sinister. The constant scrutiny was very stressful and it was just felt better to have the hysterectomy, I also had fibroids and had had a seriously abnormal smear plus my ca125 was elevated so I guess the gynae didn't have a choice. The old gynae who did all the aspirations had by now retired abroad.

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