New here - found out today I have to have salpingo-oophorectomy :/

[Joh45]

Hello <tentative wave>

My name is Joh and I am 45 years old. When I was 19, I was rushed to hospital with suspected appendicitis but it turned out to be an issue with large cysts on my ovaries and I had a number of ovarian cystectomies /operative laparoscapies over the following couple of years. In 2001, just before I turned 29, I gave birth to my daughter, conceived after 6 rounds of Clomid. Despite further treatment over the next few years, I was deemed to have 'unexplained infertility' and wasn't able to conceive again.

I have mainly experienced only very occasional issues over the past 15 or so years, until last year when I started to get pain in the location of the left ovary. I was rushed to hospital on Boxing Day in severe pain where they discovered an 8cm x 8cm x 7cm mass in my left ovary, a small fibroid in my (otherwise normal) uterus and a small fibroid by my cervix. Further tests and TVUs in January showed that I had endometriosis.

Today, I went to see the consultant who, although very nice, didn't really start the meeting well when his first statement was "we don't *think* it's cancer, but we're going to want to whip it out asap just in case . . ."

So, apparently, I have a left ovarian endometrioma. I also have a CA125 test of 56 which I've been told *could* be an indication of some cancer cells, but isn't definite. I understand that 35 is 'normal.'

I have been put on the 'urgent' list to have the salpingo-oophorectomy - removal of the left ovary plus fallopian tube.

I'm resigned to more abdominal surgery as I've had the previous cyst-removal surgeries, plus an (unplanned) c-section and my gall bladder removed!

I suppose I'm here because I am concerned about hormones, etc, after the single ovary removal and would like to hear how other people might have got on. I'm 45 so was sort of expecting the menopause at some point soon, but over the past year I have suffered from anxiety and so I like to find out as much as I can in advance so that I am able to manage this.

Sorry for such a long first ever message - if you got this far, thank you for reading.

Thanks

Joh

x

[girli1111]

Hi, I’m replying as I have similar history. Like you I had a false alarm for appendicitis, also aged 19... I’m now sure this was some sort of cyst episode, I didn’t have fertility issues, and although I had heavy and lengthy periods I was unaware I had endometriosis until my 40s. Fast forwarding to now I have had two separate salpingo oophrectomy ops (two years apart - so now aged 48 I am without ovaries at all. My first op was intended to remove a large endometrioma and ovary on the left side. I’d been having increasing symptoms, and an emergency admission when the cyst ruptured, also leaving me with a DVT. I woke up to severe right sided pain in the recovery room ... during the op they had discovered a very large dermoid cyst on my right ovary, so instead my right ovary and the dermoid was removed, and the left sided endometrioma was just drained, in order to leave me with one ovary in tact. 3 months later the endometrioma on the left had refilled and was 10cm, so I was put on prostap treatment in order to try and reduce it... this worked, but it grew again when the treatment stopped. An unrelated mri scan (for a hip pain problem) identified a concerning structure to the cyst and gp ordered a ca125 test... it came back at 473, even the gp sounded panicked when she phoned me, I was fast tracked through gynae oncology... had several mris and ct scans... even as far as being told that one of these was a ‘staging scan’. The stress was unimaginable, BUT, the final conclusion was that it was probably not cancer... the op still went ahead urgently to remove my second ovary, this time surgery was at a bgse centre, and the experience couldn’t have been more different from my other surgery. Waking up post op felt like I’d had a nice sleep, despite many hours in surgery I was in good shape. Diagnosis was grade 4 endo.... apparently severity of endo stage does not necessarily correlate to pain experienced - ie you can have mild endo but severe pain, or the other way round (my case apart from when my ovaries and cysts twisted in emergency situations). My endo was excised as much as possible, but as it surrounded and infiltrated the bowel this area was not completely cleared, I was told I may need further surgery, but 10 months on, I’m ok. Now, to the hormones.... after the first ovary was removed hormones were on and off influenced by treatment - initially prostap with livial (hrt),then zoladex without hrt... I experience some night sweats, and fatigue but put a lot of this down to the stresses of what was going on. I was also aware thT I was perimenopausal anyway, after the second ovary was removed I was told to expect a sudden crash of hormones as I would be in surgical menopause, this wasn’t the case... I think the zoladex was still in my system, but surgeon suspected some remnants of ovary had been left behind, which could still function (ovaries can regenerate apparently - like the liver....). Several months later my fSH level was checked again, and this time indicated that I was in menopause, surgeon wanted me to be seen by specialist menopause clinic because of the severity of my endo, and because I had history of DVT, I am now on a gel and tablet hrt (oestrogen and progesterone as you need to have both if you still have a uterus). I’m well from a gynae point of view, but unfortunately the hormone changes have caused a big flare up of another health issue that had been quietly ticking away, I have rheumatoid arthritis, and this has gone into overdrive, which I feel certain is down to hormone changes, I am trying to manage considerable fatigue caused by the arthritis (I assume), but haven’t got that under control yet. Phew - sorry that turned into quite an essay! When you’ve unravelled the relevant bits, feel free to pm me if you have any specific questions, or of there is anything I can help you with.

[Joh45 in reply to girli1111]

First of all, thank you so much for your reply x

There's quite a lot I need to wrap my head around as I don't know anything really about endometriosis (I was always told I had PCOS) and all of the terminology, etc, is a total unknown to me. I also don't know anything about hormone treatments or names of treatments / medications and so I think I have a lot of homework to do! I want to make sure that I have all the questions so that I can list them and ask as it's important to me that I understand the implications of what's about to happen. Suffering from anxiety / depression means that I am hyper-vigilant to anything that might affect my equilibrium and the thought of any sort of menopause is a concern in this respect!

Thank you for your story and information - I will quite probably be in touch! x

[girli1111 in reply to Joh45]

I hope nothing I said added to your anxiety, sorry. If one ovary only is removed the other is meant to compensate, but at 45 as you know you may be nearing menopause anyway. I found my chat at the menopause clinic extremely helpful, not pushy in any way, but very positive about the benefits of hrt in my particular circumstance

[Joh45 in reply to girli1111]

Oh no, you didn't add to any anxiety - I found your response brilliant as it gave me lots of things to think about / look in to which really helps me. Thank you! I will take a look to see if there's access to any menopause help here. I've been told today that I'm having the op in two weeks time so hopefully will find out by then! Thanks again. x

[girli1111 in reply to Joh45]

My op was also very speedy once the scans were done, that’s a good thing really, less time to fret. X