Please could you tell us a little about your experience with endometriosis and also surgical menopause?

I’ve always had a bad relationship with my reproductive system or ‘baby-making machine’ as I called it. My mom had issues when I was younger, so it may have been in my genes.

My lower abdominal pains, chronic fatigue, low mood, low libido, aching muscles, and all the other wonderful endo symptoms started whilst I was in the British Army (my early 20s). Not a great place to get colleagues and superiors to understand ‘women’s problems’ that were invisible. The doctor just kept saying I’d pulled a muscle and gave me ibuprofen. The trouble was I knew it was more than that it was too deep, but I got nowhere.

How long did you it take you to get a diagnosis for endometriosis?

7 years in total after numerous laparoscopy investigations, removal of an ovarian cyst. The final laparoscopy showed that my endo had returned. That my womb was abnormally small, and I was infertile. I was heartbroken and needed closure of not having children. They said they could burn the endo away, but it could come back. I couldn't keep going through the operations etc. I was beaten.

Did your symptoms of endometriosis disappear or remain following your hysterectomy?

All disappeared when I met the devil’s sister called surgical menopause as I had a total hysterectomy with bilateral salpingo-oophorectomy at 34 years of age

What were you told about surgical menopause prior to entering into it?

Haha nothing, it was 14 years ago! I was told I would go into menopause quite quickly, but I didn’t realise how quickly. That I ‘might’ get the odd symptom i.e. hot sweats, night sweats, and hot flushes ... that’s all.

Would you say your quality of life is now better or worse in surgical menopause as opposed to beforehand?

Gosh, that’s a tough one… they are 2 very different animals. My quality of life has improved as I was sleeping 14-16 hours a day when I had endo.

With surgical menopause I struggle more with my mood, my body aches all over (really bad) and now I have a bad back. I truly believe that it’s since my ‘baby-making machine’ has been taken out.

My concentration started to get worse a few years ago and my memory is shocking. I actually went to the doctor with my memory as it’s scaring me how badly I can’t retain information or remember the silliest of things. It affects my self-confidence and my partner is always shouting at me for not remembering things.

What piece of advice would you like to give to a woman considering having an hysterectomy for endometriosis?

For me the pros definitely outway the cons. Get your quality of life back. Open your mind to HRT (gel and patches much gentler) especially if you are under the ‘natural age’ of menopause as it helps protect your bones and heart, as well as, gives you backbone support to get through the other symptoms that come with surgical menopause. As the symptoms are heightened with surgical menopause, hence why I call her the devil’s sister.

What resources, websites, etc would you recommend to others wanting information and support?

Definitely join some Facebook groups, for hysterectomy and surgical menopause. If you are still in employment which a lot of women are, work with a business-like Menopause Experts in the workplace. They help you to introduce this into your workplace if there isn’t any support for menopausal women. You could be sat next to someone who is feeling just like you, but with the taboo around menopause, no one talks about it.

It’s time to talk and not hide around the taboo. I’m not ashamed to be childless not by choice or to be going through premature surgical menopause. It’s my job now to educate people of the reasons some women haven’t got children … etc

Please could you tell us a little about your experience with endometriosis and also surgical menopause?

I was only diagnosed with endometriosis at 35 after thinking I was in early menopause. I had an ultrasound in the October, and an urgent referral for complex cysts. Consultant repeated ultrasound himself at my first appointment (turns out he was working at getting onto the BSGE list) He highly suspected endo and sent me for an MRI. Results came in end of December, it turns out I had multiple endometriomas, severe endometriosis and adenomyosis. I was offered an TLH+BSO immediately! I should add that I had 3 children, husband had already had a vasectomy and I had been suffering with chronic fatigue for 5 years previous to this. My consultant was confident the fatigue was caused by the endometriosis. Up until all of this, I had suffered painful periods, IBS since my periods began, and since having my youngest, horrendous bleeding. However, I was under the impression, everyone had pain! I had even mentioned at the CFS/ME clinic that the fatigue had been worse around my period. Still, no one put 2 and 2 together.

To be offered a way out of all of this with one operation felt like a blessing!

How long did you it take you to get a diagnosis for endometriosis?

From GP sending me for a scan it was only a couple of months! However, I now realise that I had been failed for years and years. Especially for the 5-6 years I feel I lost to the awful fatigue!

Did your symptoms of endometriosis disappear or remain following your hysterectomy?

Actually, even though I know a hysterectomy isn't a cure, touch wood, I seem to be ok. 🤞 I did have excision as well as a hysterectomy & bso

What were you told about surgical menopause prior to entering into it?

A patch or pill would be needed until I was 50! That was it!

Would you say your quality of life is now better or worse in surgical menopause as opposed to beforehand?

As much as I hate this surgical menopause rollercoaster, in the 4 years since my OP, my quality of life has generally been better. I had a fantastic couple of months about 18 months in, but then something tipped the balance and I haven't been as good since. Still an improvement to pre-op.

What piece of advice would you like to give to a woman considering having an hysterectomy for endometriosis?

Unless ovaries are beyond saving, or multiple surgeries would be a real struggle keep them. Don't remove womb unless it is causing an issue either. And be sure to get excision at the same time! Ablation isn't a fix.

What resources, websites, etc would you recommend to others wanting information and support?

Endometropolis was great for endo help. For surgical menopause, it still seems tough. So much geared towards menopause help now but for surmeno, not so much. Also, those of us that can't balance, there is no real help at all. Menopause clinic hasn't been much help, in fact I've been even more unbalanced and piled on the whole 5 stone I managed to lose before the referral. They seem to have left me high and dry too. And I can't afford private.

An added extra, my operation came with complications. My ureter was burnt during the hysterectomy, it was discovered to have blocked my ureter completely 2 days later. Thankfully I had been too poorly to go home. Day 3 I was taken back into theatre to have a stent fitted, my kidney was full of pus and septic. 2 more stents and then a major op to re-implant the ureter 11 months later with my 4th stent. But that's a whole other nightmare!

Jill had her hysterectomy at age 44 in November 2020, but her story began when she was just 18. A trip to see her GP to enquire about going onto the pill resulted in a routine smear test being offered. Unbeknown to Jill and the GP, Jill actually had a double uterus, double cervix and a septum from the top of her uterus to the entrance of her vagina and, whilst carrying out the smear, the GP lacerated the septum with the speculum. Jill was sent home and told the bleeding should stop.

Jill went home and had a haemorrhage in the house before then being admitted to hospital. They assumed Jill was pregnant and having a miscarriage. She knew she wasn’t and told them so and was taken down to theatre where they stitched up the laceration.

The next day a lady came to see her. This same lady was to become Jill’s consultant for the next 20 years. She informed her of the double cervix and, at a follow up appointment, Jill discussed how her periods had always been very painful and horrific from the age of 13 but that the GPs just prescribed painkillers.

The consultant did a laparoscopy and discovered what she described as the worst case of endometriosis she had seen in someone who was only 18 years of age.

Jill then went on to have 6 months of Sustanon steroids “which did nothing” followed by 6 months without any treatment before being given Zoladex for 6 months – which started working straight away. After her 6th injection, Jill said she felt it wasn’t working like it had been. A few weeks went by and she didn’t feel very well. Her husband bought a pregnancy test which came back positive. Jill went to see her consultant the next day and a scan revealed she was 5 weeks pregnant but she was told she would not carry the baby full term as her uterus was full of adhesions. She had many hospital visits and a couple of bleeds but had her first child delivered by caesarean at 37 weeks. 3 years later, she had her second child.

“I always feel really sorry for people when their Endo has caused them to be infertile, as I risked getting pregnant twice after being told I’d never get pregnant and it happened both times. I feel truly blessed having been able to get pregnant.”

Jill believed her symptoms were at their best for around 5 years after having her children, however she was then back and forth to her consultant for years trying to manage the pain and had ovarian cysts removed. In March 2020, Jill experienced terrible pain in her left side but due to COVID she couldn’t get a scan to see if it was another cyst. When she eventually got a scan in July 2020 it revealed an 8cm mass on her left ovary. At that point, she was sent for a blood test to check her CA125.

“I got a text message the next morning – you have a raised CA125 reading – I have referred you urgently to Gynae.” The 2-week rule to be seen urgently was now 4 weeks due to COVID so Jill paid to see a Gynaecology surgeon where scans revealed it looked like both ovaries were covered in endometriosis and both were enlarged with a big cyst on the left one.

It took a lot of battling with herself and talking to a lot of people before her husband said “you’re struggling to keep something that’s not healthy you might as well have it all out” so she asked for a full hysterectomy. The surgeon suggested only removing her left ovary but it was Jill who pushed for the hysterectomy and oophorectomy – “I felt very unsupported making this decision”.

Jill was transferred into NHS care for her surgery. The surgery took 5 hours due to the endometriosis. When Jill was in hospital for her hysterectomy and oophorectomy, no one mentioned HRT to her. It was only because of her profession and access to information that Jill was able to educate herself before surgery and had made a choice to take HRT. However, when she asked her surgeon about this she was simply told: “let’s see how you get on and get in touch with your GP in 6 weeks!”

Jill insisted she would not leave until she had some HRT and waited until 8pm on her day of discharge to get this. She recalls that she was sent home with no information “it is no wonder so many women struggle when so many obstacles are put in front of them.”

Jill is taking HRT because she insisted on it and she is adamant that her recovery would not have gone so well without it!

She recognises that her energy levels aren’t so good, so she intends to ask for some testosterone. With the histology of her left ovary being inconclusive, she feels that no doctor seems to know if it is safe or not for her to take HRT – “I know it makes me feel better but there is a small risk of it causing issues but again I’ve had to take that risk on myself”.

When asked about how her quality of life before and after surgery compared, Jill responded that before she could never plan any trips as her periods were so disruptive. Since her hysterectomy she realises how bad her pain was and that she had just been putting up with it.

We asked what advice she has for other women going through a hysterectomy due to endometriosis: “Research research research everything before making your decision. In terms of HRT look at benefit over risk. The scaremongering around HRT is awful – it’s not right! Don’t be pushed around by any medics they don’t always know what is best for you and your lifestyle.

I was given a sick note for 6 weeks … there’s no way I could have gone back to work after 6 weeks! Emotionally, you’re not ready for it - people don’t realise how personal the surgery is to you. Finally, I think it would be really good if you could hook somebody up with somebody else that’s been through it, like a hysterectomy buddy to talk through your worries”

Please could you tell us a little about your experience with endometriosis and also surgical menopause?

I had stage 4 endo so bad it included disease in every pelvic organ as well as diaphragm. I had unsuccessful surgery that left me worse off than I was. Endo debilitated me to the point I was bedridden. I finally found an endo specialist across the country who took my case. I had a 7.5-hour surgery with him (one of the worst cases he had seen.) My organs were in such bad shape, I had to get uterus, cervix, fallopian tubes, appendix, right ovary and 1/4th of left ovary removed. All that in one surgery plus excision of the endometriosis. The 3/4 ovary that was left had to be dissected and reconstructed. He told me there was most likely some cells left over.

2 years later, I had that ovary removed due to very painful recurring cysts. I have not had pain since! Balancing hormones is tough, but it beats any day with endo.

How long did you it take you to get a diagnosis for endometriosis?

It took about 7 years. Was diagnosed with IBS which after years turned out to be endometriosis.

Did your symptoms of endometriosis disappear following your hysterectomy?

Yes

Would you say your quality of life is now better or worse in surgical menopause as opposed to beforehand?

Better in surgical menopause!

What piece of advice would you like to give to a woman considering having an hysterectomy for endometriosis?

It is a misconception that hysterectomy cures endometriosis. I had a great doctor who told me this prior to my surgery. I had to have it removed due to the damage to my organs. Not because it would be a cure.

What resources, websites, etc would you recommend to others wanting information and support?

Join the Surmeno Connection on Facebook! All ladies in surgical menopause. I have learned so much :)

Rachel first started to experience Endometriosis symptoms when she was around 18 years old. For around 4 years, she was back and forth to her GP and misdiagnosed with IBS amongst many other things.

“I lost all of my twenties to being in bed for most of the weekend as I spent the weekdays fighting the pain to get through my work and holding down a job but by the evenings and weekends I had nothing left to give.” Rachel said she felt fortunate enough to have someone to bolster her fight to be heard. Her late godfather was a professor in gynaecology in America. She recalls talking to him and that it was he who suggested her symptoms could possibly be endometriosis. He told her that she must keep fighting to be looked at.

Around 4 years after first experiencing symptoms, Rachel finally had a laparoscopy which did indeed diagnose endometriosis. The surgeon explained that he didn’t feel confident enough to laser the endometriosis as it was all along the lining of the bladder.

More months and years passed during which Rachel was really struggling with the pain and symptoms of endometriosis.

She explains that as result of the hormone imbalance she was experiencing she also developed a skin condition where her face was covered in nodule cysts, which really affected her confidence.

By chance her mum read about an endometriosis specialist in Devon, which was only the next county up from where she lived in Cornwall.

Again, she faced a fight to get this referral and there was also a long waiting list. Once in his care, he agreed to do another laparoscopy and laser what he could but he warned Rachel that it would probably grow back in 5 years and could potentially come back worse.

“I agreed to proceed as I just wanted some relief from what I was currently experiencing”.

Things were ok for a time, but year on year things started to get worse. Almost five years to the day of her laparoscopy Rachel was pretty much back to where she had started. The pain and the bleeding were horrendous. She felt so tired and run down, something she described as being difficult to explain to others – this wasn’t just a bad period.

Rachel was in her mid 30s when a hysterectomy was discussed as an option. “I was exhausted. I had had enough and I think, in my desperation, I just said to take it all out”.

Rachel had her hysterectomy and oophorectomy in 2013. She was given some HRT tablets and sent home. She said the wheels started to come off quickly. Her surgical menopause symptoms came thick and fast: night sweats, hot flushes, hair loss to name a few. When she was able to drive again after her surgery she recalls driving to a big open space near a cliff top, not wanting to do anything to herself but feeling blank. “My head, my personality, I felt completely lost – I didn’t know what to do for the best. I picked up the phone and rang a friend and said I didn’t know what I was doing here!”

Rachel was back and forth again with several trips to see her GP before finally being referred to the only menopause specialist there was for her area. After a long wait, Rachel described seeing this Specialist GP as being life changing in the sense that she was finally understood and educated in all thing’s surgical menopause from vaginal dryness to the psychological symptoms. She worked with Rachel to get her HRT balanced and stable.

Rachel now has to access this care by paying privately. “NHS Cornwall decided to pull funding for the one menopause specialist we had and now we have nobody to address an issue that all women will be affected by at some stage in their lives. With the demographic of the county being largely on the poverty line and/or retirement age, paying privately is just not an option for many and is a disgrace”.

When asked about how her quality of life compared before and after surgery, Rachel acknowledged that pain wise she is a lot better and that she is glad about that.

“…but to get my endo under control, I’ve gone and got myself a whole new list of problems. It just doesn’t seem fair. 20+ years navigating the system for endometriosis and now surgical menopause – the number of frustrated tears I have cried on top of all the pain – people in the system of health care not showing any care, this is what upsets me more than anything”

Rachels last words of advice were to do as much research as possible, find out who is out there to actively help you, what doctors are in your area to help you.

For Rebekah, things happened extremely quickly from the onset of her Endometriosis symptoms and she was scheduled for surgery within 12 weeks. She described her initial pain as being like labour contraction pain and with that came abdominal bloating.

It was a couple of months later before one particular episode made her reach out to her Gynaecologist. “I had this sharp stabbing sensation that was intensely painful about where my right ovary was, and I almost passed out from the pain. I couldn’t walk - it was crazy intense!”

Rebekah’s Gynaecologist listened to her describe her symptoms and immediately did an ultrasound scan. This revealed a chocolate cyst on one ovary and what looked like another developing on the other. Reluctant to try hormone treatment at this stage due to her history of post-partum depression, they decided to just keep an eye on things.

Six weeks later, she returned for another scan and at that point both ovaries had developed chocolate cysts. In constant and severe pain in both her pelvis and her back, she decided she couldn’t carry on living with this. Her gynaecologist suggested exploratory surgery and to go ahead with a total hysterectomy (leaving the ovaries).

In January 2018, Rebekah had her surgery. Stage 4 endometriosis was discovered and she ended up having a partial hysterectomy as her cervix was fused to her rectum.

Fast forward to June 2019 and, after struggling greatly since her partial hysterectomy with on-going stage 4 endometriosis and recurrent bilateral endometriomas (chocolate cysts), Rebekah was scheduled for an oophorectomy. Rebekah recalled speaking to her Gynaecologist “So, you’re telling me that, at the age of 36 years old, it makes more sense to send me into surgical menopause than to keep my ovaries?!” to which she recalled him telling her that in her case yes and that she could take a pill and be fine!

Unfortunately for Rebekah, she is now 20 months post-surgery and not on any HRT as her endometriosis symptoms kept returning really quickly. This despite 3 separate attempts to try a different HRT regime. She has also developed osteoporosis during this time.

Rebekah feels that doctors tend to grossly under inform their patients prior to an oophorectomy. When asked what has helped her and what advice she has for others, Rebekah spoke very highly of The Surmeno Connection. She advised others to educate themselves as much as possible and that she was able to educate herself prior to surgery via The Surmeno Connection website and by joining their support group on Facebook. Through this organisation, she has made some close friends – which has been one good thing to come out of everything she has been through. However, she feels she has traded one huge problem for a collection of problems and now greatly struggles with menopausal symptoms particularly fatigue which is severely affecting her quality of life.

Please could you tell us a little about your experience with endometriosis and also surgical menopause?

I was diagnosed when I was 19 with Endometriosis. I then had 2 large Ovarian cysts removed when I was 22. I had a further 4 operations to remove cysts from my ovaries over the next 15 years. When I was in my late 30’s I had my ovaries removed. This put me into the menopause. I was given HRT and sent home to get on with it. Had no idea of the impact it would have on my life.

How long did you it take you to get a diagnosis for endometriosis?

I'd been back and forth to the doctors with period pains since I was 12. I was diagnosed when I was 19 by laparoscopy.

Did your symptoms of endometriosis disappear or remain following your surgery?

I haven’t had a hysterectomy. I still have my womb. I don’t have my fallopian tubes they were removed as they kept filling up with fluid and it was so painful. I was also told that by having them removed my chances with IVF would be improved.

What were you told about surgical menopause prior to entering into it?

I honestly don’t remember being told how it would affect me.

Would you say your quality of life is now better or worse in surgical menopause as opposed to beforehand?

I wish I hadn’t had my ovaries removed although I don’t think I would have been able to keep them. They just kept growing cysts. I still have painful periods due to the HRT I’m on, although having tried quite a few different types this is the only one I have found that it feel like I used to. No one told me that if I had my ovaries removed I would literally lose all my sex drive. I think I know how a dog feels now.

What resources, websites, etc would you recommend to others wanting information and support?

There is so much more information and advice out there these days. 20 years ago, it was very different. I found the National Endometriosis society were really helpful. I can’t remember if the hospital told me to get in touch or I found out about them.

Vicki started off our chat by recalling that she had started her periods when still at primary school and only 10 years old. She recalls needing time off school due to the severity of the bleeding and pain.

At the age of 14, Vicki went onto the pill to try and help with these symptoms, but recounts how her pain became unbearable in her early twenties – “I was in a serious relationship. The pain was really bad both during and after sex and I would bleed with sex”. She described her pain at this time as being a deep pelvic pain and every day she would feel like she had cystitis with a constant burning pain in her bladder.

It wasn’t until Vicki was 22 – after years of suffering with unbearable pain and horrendous periods – that she was finally diagnosed with Endometriosis and it was lasered via laparoscopy.

The next ten years were very up and down for Vicki. She had times of feeling ok but always had really bad periods. She had further surgeries, including excision surgery in 2008 but the heavy bleeding, pain and extreme fatigue continued.

In 2014, Vicki had another laparoscopy by a well-known endometriosis specialist. During her laparoscopy, he found endometriosis, adenomyosis and fibroids. It was at this time that Vicki was put on injections to induce a temporary medical menopause to stop the endometriosis tissue from growing and to help reduce the symptoms.

The injections didn’t really help and made Vicki feel depressed and she suffered with terrible insomnia. She’d already explored all other options including the pill and coil so in 2018, at 35 years of age, Vicki had a hysterectomy but kept her ovaries. Her consultant felt this was the right choice and described her as having a ‘toxic uterus’.

Vicki experienced menopausal type symptoms following her hysterectomy despite still having her ovaries. Blood tests revealed that her oestrogen levels were on the lower side. I asked if anyone had ever talked to her about the possibility of an early menopause due to the blood supply being affected following the removal of her uterus: “I was told that my ovaries would probably shut down in 5 years – that’s it”. She recalls suffering with body aches, fatigue, brain fog, insomnia and hot flushes.

Vicki went to the Newson Health clinic and was prescribed oestrogen gel to help with her symptoms.

However, Vicki’s pain got increasingly worse over the next few years despite her hysterectomy. When asked how this impacted her mental health, she said “at times I was made to feel like the pain and my symptoms were all in my head. I have really suffered with depression and anxiety and at times even felt suicidal”.

With the support of her family, she eventually chose to go private and, in October 2020, she had an appointment with a Consultant Gynaecologist in the West Midlands who specialises in laparoscopic surgery and endometriosis.

It was at this appointment that Vicki felt like she was really being listened to for the first time when describing her pain and other symptoms: “it was so nice to feel that my mental health was not questioned” Vicki had an MRI which revealed that she had deep infiltrating endometriosis and surgery was booked in for January 2021.

The surgery revealed deep infiltrating endometriosis on her utero sacral ligaments, vaginal vault, pelvic wall, pouch of douglas and left inguinal ring. Her bowel was attached to her pelvic wall and her left ovary was tangled up in her bowel.

Although the severity of the findings was truly shocking, with it came some form of relief: after so long worrying and fighting, none of this was in her head as she’d be made to feel or believe in the many years of fighting to be heard.

I ended our chat by asking Vicki what advice she would like to pass on to other women considering a hysterectomy for endometriosis.

“Do your own research, think carefully about children too – are you sure you don’t want them, are you sure you don’t want anymore? Make sure that any surgery is done under a BSGE accredited surgeon.

With regards to having a hysterectomy, ask questions beforehand about menopause and what to expect even if your ovaries are being left, and ask for follow up care following surgery – don’t expect it to be automatically provided.”

Vicki is very passionate about raising awareness and using her own experience to help others. You can find her account on instagram @vicki_endometriosis_advocate_